tag:blogger.com,1999:blog-84539705117851363562024-03-15T21:10:21.806-04:00 AAC Apps, Service Dogs, and Autistic life thingsNon Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.comBlogger44125tag:blogger.com,1999:blog-8453970511785136356.post-45763574434977900682019-03-12T21:35:00.000-04:002019-03-12T21:35:04.846-04:00If you want to improve the lives of Autistics you need to start with communication access.<div dir="ltr" id="docs-internal-guid-97550734-7fff-e90b-5b54-5d1446340c2d" style="-webkit-text-size-adjust: auto; line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">All to often I hear how parents want to improve the world for their children, how they want to make their autistic kids lives better and easier, fretting over their future and independence but, here’s the thing If you want to improve the lives of Autistics everywhere and make the world more accessible for us then you need to start with communication access and building a communication accessible world, also improving sensory accessibility is critical and just as critically vital and important, but for right now I’m going to focus on communication. Right now everything in society is built around accommodating and improving the lives of people who use mouth words to communicate! All the cool high tech things are all based on being voice activated, and society as a whole is built around speech. while the new tech is impressive the vocal speech geared focus needs to change and a shift needs to be made to also encompass features and communication options for non speakers, Even from early childhood the entire focus is on obtaining spoken vocal speech in lu of other communication support, this is not only counter productive, as providing AAC and communication supports has repeatedly proven, in multiple studies to aid in vocal speech development in children who will eventually develop speech, but it is out right cruel harmful and detrimental to the child mental physical psychological health, as well as directly harms their development and well being. This needs to change. AAC needs to start early as possible and needs to be accessible at all times, moreover we need to change the world to help all non speakers flourish and thrive and have equal. We need to build a non speaking accessible world! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">So how can we do this? What can you change right now to improve communication access? How can we as a society change our shift to communication access for autistics and everyone? Below are some basic ideas and far from all of them! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">We must first start with communication access being seen as a basic right everyone has! And we need to shift how we approach Autism in early childhood, the primary focus for parents in an autistic child’s early childhood should focus on finding, seeking out, providing, teaching and modeling communication supports and options that work for their child! AAC should be started as early as possible, it should be tabo to wait till 3 to start working on finding the right communication and as early as 26 months or earlier should be seen as common sense time to start with AAC for a child. Having backup supports even for people with decent to excellent speech should be considered a default common sense thing to do and failing to seek out AAC or taking away or removing AAC from anyone should be seen as horrifying and repulsive as taping someone’s mouth shut and binding their hands or other horrible graphic things! It is never ok to take away AAC even if all the person says is random sounds with it! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Next let’s address things like apps and businesses </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Apps and devices</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Phones and and apps have developed a lot of really cool and neat features for the speaking community! Bixby, ok google, and echo are all really really cool but we need businesses to focus on making neat features that are awesome for non speakers as well. We need ways to access these things that don’t rely on mouth words there are many access ways that would be great to do this!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Eyes and head movements , give us access with our eyes! Getting eyegaze or head tracking would be huge! Not only will this make devices accessible for people who flatout need eyegaze or head tracking it would also open up a hands free option who are less likely to those of us, like the autistic community who be considered for it and for non speakers in general! This would open up a world of hands free accessibility to our phones and devices!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Gestures: on the same idea as head tracking and eyegaze It could be more customizable to have a certain movement or wave mean x or y, nd on the theme of gestures...</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Asl tech for bixby echo ok google alexia ect! Training these Siri, bixby, eco, ok Google ect.. to read asl would also be huge and would again give yet another method for not only non speakers but also the deaf community to use and enjoy these services and features!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Having the ability to train it to recognizing certain sounds means to activate certain things would also be really useful tool for some of us?</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Type to Siri, bixby each ect, while Siri and ok google already seem to have the type to option bixyby and Alexa still seems to need to add it and I don’t know how you’d type to echo, but this is a good and worthwhile feature that should be added, it doesn’t give us the same hands free capabilities as the other options but it should be easy enough to set up and gives accessibility.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Recognizing AAC, finally improvements allowing these products ability to recognize and reply to AAC voices reliably would be huge for many of use! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Schools, schools need to work on normalizing and integrating AAC and communication supports (and reading supports) there needs to be visual schedules, PECs and all students should be given letter boards regardless of their speech and communication styles, </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I shouldn’t need to say this but schools also need to provide books materials and all their signs (yes every random ones you hang you word word of the day) in Braille!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Another really big and important thing schools could do to implement and support communication access and help AAC users is to provide in class, in school AAC to all the students! Yes that’s right you heard me, I want schools to provide devices loaded with high tech comprehensive AAC apps like proloquo2go, lamp, speak for yourself , and cough drop to /all/ their students, and for them to teach students early both how to use them, support and validate every students use of them, allow students to switch between speaking and using AAC and to teach both picture sentences and typing to speak! And I want these devices accessible at all times to all the students, yes I realize this is expensive and will be seen as radical, but for once I want to level the communication field I want to normalize AAC, I want to normalize shifting between using AAC and speaking and going back to AAC, i want nonspeaking kids to see their peers use this too, we need to start early building a culture of communication support and acceptance. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Community/ Businesses </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Picture menus picture menus would be Huge in not only helping me figure out what the food options are but in quickly selecting what I want. Picture card menus would also be useful esepcailly places such as coffee shops and having things like placeMats and counter Matt’s with a letter board and some images for things like ”yes” “no,” “ something else,”. “Thank you,”. “I have an allergy,”. Ect would be amazingly helpful </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Auditory based menus, in addition to picture menus it would be good to have some ability to click on the the menu option or photo and have it read out loud to you, especially to read the ingredients, don’t assume because someone is non speaking and uses AAC or types or uses a letter board to speak that they are good at reading. plenty of us also have other co occurring disabilities, I often struggle in new restaurants due to my reading disabilities and have people I’m with either read to me or I order based on their food choices, so having a way to have the menu be able to read to you would be huge. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">On that note I never see Braille menus this needs to change I don’t use Braille but come on! If we are building a communication accessible world you need to offer all your materials with the option of Braille </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Menu app idea: Really an app which picture menu that will not only read to you what the items are and what’s in them but all lets you select what you want, and say “ I would like a steak tips rare, “no pepper ,” and also have a section for allergies and having some way to send the info directly to a device with the meal ticket for the waitress would be huge! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Cognitively accessible resources and materials, I shouldn’t have to point this out but it needs to be said,everything, i mean everything all materials should come with cognitively accessible options, from menus, to news papers, to forms, to things like loan and insurance information, I mean let’s be real here for a moment, Loand and insurance information should legally be required to have extra cognitively accessible versions of their information that doesn’t hide facts. And literally everyone would benefit from that, non disabled people with no cognitive or neurological impairments would probably be in shock at how much more understandable things are and way happier and life would be much easier. </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Events And meetups ect,</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> this is where you need to pull it all together you need to consider location, you need to provide cognitively accessible materials, for any sort of event you are planning be it an acceptance, pride day, a march a protest or a seminar, you need to consider AAC users. Sending out materials a week or so ahead of time for “this is what you can expect, “ is really important, in those materials you should also include things like any scripts AAC users may need to program in pro our devices </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Location: When it comes to planning a location accessibility can be hard keeping AAC users in mind for these is really important it is really hard for us to be heard in really loud environments so if you are wanting to do a disability based meetup or event choosing a place with good sound insulation that isn’t too loud is really important, places like bars and pubs are not generally easy to be heard in, not to mention generally sensory unfriendly in general. Also consider lighting, things like will the sun glare out AAC device screens? Is there shade? Is there a place for people with high tech devices to plug in or place their devices for typing?</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> Teleconferencing And telecommuting and online meetings: all to often there Re events that’s are either far away or multiply in cessions and often both, telecommuting needs to be made standard for events and meeting, I know it can be hard to have a sit down meeting and have one AAC user compute in via video but there are ways to make this work, from having the video up and having a chat screen that people actually pay attention to, or even just having one person reliably read the chat screen, to having a text to speech program read the screen, even basic things like having a loud enough speaker so their AAC voice can be clearly heard over it and giving them space and time to participate even while telecommuting panelists also needs to have the ability to telecommute to events as well.There are a lot of events which should be easy enough to set up with a projector system. This would make many more meetings more accessible to not only non speakers but people with multiple disabilities and in lower income bracket who can not easily travel or attend event or who have a lot of barriers to accessibility and want to attend but don’t have the spoons to manage the crowds, travel, money, overload barriers ect. ( this should used as an option you make available so you don't have to put all the effort into making your event as accessible as you possibly can, it should only be added as an additional option in addition to all the other things you need to do to make your event as accessible as possible, You do not get to offer telecommuting and skimp kn accessibility)</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Basic AAC training, all staff working or volunteering at events, seminars ect (also you know teachers, doctors social workers therapist, people in the psychiatric field, emergency responder, specialists ect) should have some basic 101 of AAC training, it doesn't have to be complicated it can be simple like wait for the person to respond, don’t ask a million questions at once, make sure the person is in a state they can answer you before asking things, simple things like that. also some training on the challenges AAC users face would be useful </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Equipment when having an AAC panelist it is really important to consider their needs in planning equipment, for example a mic doesn’t usually work well with a speaker but having a cord or some way to connect to the sound system would make a huge difference, charging stations are also critical to have in plenty of AAC users its a good idea to have several extension cords out and plugged in for AAC users to make use it throughout your events.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Food </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Yes this is actually a communication thing food at events and everywhere needs clear labeling, we need a clear way to communicate about food choices and ask questions, it is also critical that all food at events and otherwise clearly list ingredient and possible allergies , ideally with pictures along side staff in charge of food need to be trained in AAC, asl and also know what is in the food and what allergics are in the food.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Hospitals and medical staff and doctors appointments </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is another area where communication supports need to be integrated, we need more than on a scale of 1 to 10 charts. Every doctors office and hospital should have communication boards and letter boards as well as picture cards to aid in communication, another thing doctors and medical staff need to have available is coloring pages for showing where and how pain is for both the whole body and every part of the body. Doctors also need to learn to ask direct questions, provide printed material (or email it) of summaries instructions ect (agin cognitively accessible are we sensing a theme yet?) Doctors need to have a way to communicate with patients outside of appointments like email or text and not phones. Also when scheduling doctors need to schedule twice the time for AAC users, non speakers and people with communication disorders. Clear examples are also important, and to explain what sort of things are important for them to know with examples. Also having non speech based info of these and visuals is also important as options.</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Finally You should have staff who are multilingual someone working who is bilingual on each shift (different employees don't over work your interpetert and one or two multilingual employees) and at least one person fluent in ASL and again all materials should be cognitively accessible, multilingual, in braille </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">These are the very bare minimum, this is just the start of what we need to do to start building a Non Speak accessible world, there's a lot that needs changing some will be easy and you can do right now! Others will require larger cultural shifts but we need to start changing these thing now! If you want to improve the lives of Autistics and make this world more accessible to us you need to make accessible fi</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">For non speaker, you need to normalize communication supports and you need to prioritize providing us with those supports and teaching them to us in ways that work for us so we can have out voices heard!</span></div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-4341882915615594292018-11-01T17:39:00.002-04:002019-01-06T11:39:27.872-05:00Brain fog autistic speaking dray 2018<span style="font-family: "arial";"><span style="-webkit-text-size-adjust: auto; font-size: 14.666666984558105px; white-space: pre-wrap;">Ok yes this is a scattered mess thinking is had right now I’m sorry </span></span><br />
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<span style="font-family: "arial"; font-size: 11pt; vertical-align: baseline; white-space: pre-wrap;">t’s autistic speaking day but it’s also the day after Samhain (Halloween ) so my brain is tired and I feel brained, I don’t know much what to say, I tell myself I need to remember to conserve my spoons and write this a week or a month ahead, it’s not like I don’t have plenty of blog ideas that come and go unwritten because I don’t get the spoons to sit down to write them down so they go un written. However once again that didn’t happen this year so this year I’m doing a short half processing spontaneous post, but perhaps that is most appropriate, to honor the day of rest and accept my own need for saving spoons, to not strain to make a perfect logical thought out articulate piece about my right to be as a human, or how being Autistic is , or about the rights to communication access or how autistic people are constantly devalued and talked over and how we are taking this day back to have our voices heard because at the end of the day no owns value should be based on our ability to explain these things to you in a week though out way or to word and all communication is valid this is autistic speaking day and for today I’m communicating more with gestures than AAC and that’s ok my thoughts aren’t clearly typed and skcattered and still I’m autistic and human and my life aphasia value this way as doe every autistic no mater how we communicate or how much we appear to be aware or understand, our voice in all forms should speak of autistic experience and our live still have value. We shouldn’t need to prove these for you to accept theses </span>Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com3tag:blogger.com,1999:blog-8453970511785136356.post-2887183282688575692018-06-19T01:33:00.001-04:002018-06-19T01:35:58.773-04:00Eye-Gaze AAC for Autistics!<div dir="ltr" id="docs-internal-guid-eb32de25-1680-9c72-028d-05f54e0425e4" style="-webkit-text-size-adjust: auto; line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is a topic I have been passionate about for some time now, though I have posted about it elsewhere, it’s time I make an official post here, I maybe be the first to dis</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> Ok so aac is kind huge for me, I absolutely love aac and specifically my AAC, recently I was introduced to An aac device that had something called eye gaze which you can use your eyes to select and speak things! I was almost immediately inlove! </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is typically for people with little to no motor control in their hands and fingers but to me it opened up a whole new idea world of overcoming some of the brain body disconnect that comes with being autistic, especially on my especially on days where I'm having a really hard time with coordination, during shutdowns, post meltdowns and post seizures when this tends to be a lot worse, you could also type to speak too or use your eyes that's was the best part! It was either! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">I keep thinking about it and wishing proloquo2go offered eyegaze and how much it could really help other autistics who have more of a brain body disconnect than I do also access aac as well or and this could really help out those who use FC and maybe useful for people using FC to try and be able to have access to addition option with FC for those who use it! </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">*this is not meant to be a replacement for FC and will not work for all FC users but could provide second communication option for some individuals using FC*</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">We really do need smaller more portable and more accurate eyegaze based aac systems, and or for dynavox to make a eyegaze passed switch/control like the PCEye go. That is comparable with the iPad and ideally bluetooth connected so we can keep our devices safe in waterproof cases but still utilize the eyetracker, additionally smaller tobbi I-12 type series of dedicated speech devices that are more portable for autistics would also be ideal</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Unfortunately eyegaze isn’t really even ever considered an option or priority for autistics, I suspect this is largely because the brain body disconnect many of us experience, especially those of us who are intermittently verbal to non speaking /part time to full time aac users) experience is often not well known and not much discussed outside the autiatisticcomminuty. It’s not even something most clinictions are much aware of or really understand in my experience so it comes as little surprise to me that the major manufacturers of eyegaze aac tech would not be marketing to the autistic community, which is a huge loss for us.</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Eyegaze isn’t perfect, and it does have its down side of coarse it it is tiring, expensive, hard to get approval for right now and currently most no one knows about its massive benefit and need in the autistic community! The modern AAC tech, while much improved also still needs to be made smaller and more portable S well as more accurate from slightly off angles, but I think it could still believe eyegaze AAC could make a world of difference for many other autistics as well! I think it would be huge if more nonspeaking autistics could have eyegaze as an option!. Eyegaze needs to be made available to the autistic community.</span></div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-54396448269816696962018-06-18T16:14:00.000-04:002018-06-18T16:14:34.462-04:00Happy Autistic Pride Day <span style="caret-color: rgb(69, 69, 69); color: #454545; font-family: UICTFontTextStyleBody; font-size: 19px; text-decoration: -webkit-letterpress;">Today is autistic pride day, and I really don’t have much I know what to say, ca months ago I wanted to be sure to have some big post out for this day, but honestly? I’m still struggling to get back into the swing of posting again, and right now there is just so much going on in the world and in life spoons are really low, so I want to keep it simple, </span><br />
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Happy autistic pride day, remember to celebrate neurodiversity today, </div>
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Uplift autistic voice,</div>
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Center the voices of Autistic PoC today! </div>
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Presume competence </div>
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Everyone has a right to AAC</div>
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Communication access rights are basic human rights! </div>
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Embrace stimming</div>
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You are not a burned </div>
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Your support needs are valid and matter and you deserve access to supports that’s are helpful and not harmful to you as an autistic person!</div>
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There is so much more I want to say, I want to make a long post about autistic culture, I want to talk about the importance of aac but right now none of it is falling into words, this year has gone by so fast I can hardly believe it, </div>
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I hope everyone has a wonderful autistic pride day! </div>
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<br class="Apple-interchange-newline" style="-webkit-text-size-adjust: auto;" />Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-32759393579596935262018-04-25T03:08:00.000-04:002018-04-25T03:08:26.871-04:00You are failing Autistics when you don’t prioritize AAC<div dir="ltr" id="docs-internal-guid-bff5b218-fb9f-e167-c277-83669ae58f0a" style="-webkit-text-size-adjust: auto; line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">this is going to be short to get me into the swing of blogging again,</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">lately I have noticed a very upsetting pattern parents of autistic, in many cases non speaking autistic children don’t know what AAC is, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This is not ok!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">This concerns me greatly! I suspect more often than not it is because “specialists,” hold off on mentioning it and or introducing it in hopes of pushing for mouth words, all to often we know that specialists will tell families to wait on aac, even though studies have shown aac help build languages and communication skills!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Here is the thing I’m going to lay it out short and sweet, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">AAC need to be the first step! </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Communication is a basic human right!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Your first step must be Providing Access to communication</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> If it's not then you are failing Autistics!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Right after diagnosis a child should immediately start the process of finding communication supports that help them and work for them as well as at least 2back ups! This needs to be the primary goal of any or all autism based services, to provide access to communication, also sensory supports, </span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"> I really can’t stress enough how critical aac services are!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">If your goal is to teach the autistic to stop stimming you are failing autistics!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">If your goal of to teach them to be indistinguishable from peers your failing autistics!</span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">If your first and primary goal is not providing the autistic client with access to as much communication as possible then you are failing your Autistics! If you are a service provider you are failing your Autistic clients! </span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">these services need to also include teaching presumption of competence to family and all other support staff working with the autistic individual as well, and lessons on the importance of respecting their disabled child’s rights and dignity!</span><span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></div>
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<span style="font-family: Arial; font-size: 11pt; font-variant-east-asian: normal; font-variant-ligatures: normal; font-variant-position: normal; vertical-align: baseline; white-space: pre-wrap;">Yes you are failing Autistics when you do not prioritize AAC and access to communication!</span></div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-3738526925543638682017-11-01T23:38:00.002-04:002017-11-01T23:39:18.724-04:00We Need To Stop Treating AAC Like A Last ditch Option and so much more!im going to keep this short, I’m tired and low on spoons I have been for a while now, I mean low on spoons but I wanted to get something out for Autistic speaking day.<br />
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We need to stop treating AAC like a last ditch option, so often I see parents waiting till their kids ore older to try AAC, they are told to try for speech they believe that if they go straight to AAC that they will loose the opportunity for speech, but the science just isn’t behind this! Study after study has proven that if anything AAC helps promote speech but more importantly they are loosing valuable time and spending years denying their kids access to communication methods in fear of not getting for mouth words. This isn’t just against the since it’s massively cruel, providing and teaching communication to your child should take priority over all else. Not all of us will gain mouth words and that’s ok but it is critical you do everything to help us access methods of communication that work for us!<br />
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We need to do away with the idea of prove it low tech first this is archaic and BS just google “everything wrong with prove it low tech first”and that should give you plenty of blogs with explanations.<br />
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Introducing comprehensive aac early and modeling is critical<br />
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We need to start treating AAC like a language and we need to start valuing AAC as much as we do as mouth words!<br />
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We need to recognize that AAC access is important and critical for many individuals with a variety of persevered verbal abilities. i say percieved as all to often what you see is not all that we are trying to say or express but often we cant get all the right mouth words, or the wrong ones come out, or they wont come out at all even when we know exactly what we want to say.<br />
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there are many Autistics (and im sure NTs) who can speak well or even exceedingly well but loose speech and need AAC part time. their need is no less real than someone who has never spoke a word.<br />
some individuals need AAC to help them hold and process thoughts as they type them out so they can communicate clearly. Their need for access to AAC is real!<br />
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Some Autiscs have an easier time typing or using symbols than mouth word their need for AAC is real<br />
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Autistics who ha intermittent speech, their need for AAC is rel<br />
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the autistic who has neever spoke a words need for AAC is real<br />
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Autistics that type and speak the words as they types need for AAC is real<br />
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baseline if someone expresses and interest in AAC no matter how old or how verbal their need and right to have access to AAC is real and valid<br />
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we need to change the converastion around AAC, from something tabo to just another way some individual communicate.<br />
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lastly it is acceptable and we need to nomalize switching between multiple modes of communication be it<br />
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AAC- signs- sounds-pecs<br />
0r<br />
verbal speech aac-sounds<br />
or verbal speech-sogn<br />
or<br />
sign-aac sounds - letter board<br />
or<br />
letter board-verbal speech- pecs<br />
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and so on most any combination you can think of every individual has needs to be allowed their right to switch through ( yes even you)<br />
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<br />Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com2tag:blogger.com,1999:blog-8453970511785136356.post-73420287911446978762016-11-01T23:56:00.000-04:002016-11-01T23:56:08.115-04:00Autistic Speaking Day I'm just going to be me<span style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 23px; text-decoration: -webkit-letterpress;">growing up I spent years learning very hard how to blend in, and yeah I largely failed at it, it seems but still there are parts of me I blocked up and away to try to blend, like shimming, I stim, a fair bit less than I did when I was little (though I am told I still stim a lot) adapting my communication and other things,</span><br />
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But </div>
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Blending in is not my goal <div>
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I just want to be me </div>
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I'm tired of trying to fit into everyone's boxes of how they think I /should be, </div>
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Everyone has these expectation </div>
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Either I must be or try to seem non disabled and I must be this (fill in chain of behaviors social skills, likes and dislikes, ways of communicating subjects of interest leaguer activities and interacting here) way to fit in to blend (said way burns out all spoons and is not achievable at all even with my best effort put forward )</div>
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Or</div>
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I need to be autistic and disabled in exactly /this/ way (fill in arbitrary random expectation of what people expect me to be like and my life line to have looked like as a white autistic CIs disabled female) to have my current needs communication needs/style validated </div>
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If your a certain age you can't like xyz </div>
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If your disabled you can't like (fill in arbitrary things here)</div>
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I'm tired of having things that I have learned, skills I have gained relationships in my life and other things used as ways to invalidate my disabilities,</div>
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Growing up I went through a phase where I worked hard to blend because I was told and I believed it was the right thing to do, that how I would be successful, happy so I gave it my alll and when this stage hit I sort of failed in horrid ways it was a mess, i also wasn't able to properly figure out where and how and that's way to much to write about the day after Samhain, I mostly just stood out a lot more and looked a lot weirder,.....and then I started a weird mix of trying to pass harder while not caring and embracing being the weird one,</div>
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I'm still the weird one, the strange one and I embrace that but I no longer want to burn my spoons to try and pass, I just want to be me, I'm now learning to accept myself, and my limitations, and that it's ok to use support and do things in ways that I prefer and that work better for me.</div>
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That doesn't mean I'm backsliding </div>
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That doesn't mean I'm faking </div>
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That doesn't mean I'm trying to be deceptive </div>
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That doesn't mean I'm lazy </div>
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It just means I want to find and do what's right for me </div>
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I just want to be me </div>
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I am going to do what works for me, when anyone else does that it's considered a life skill, many times people find tricks and short cuts that work for them and help them and they are seen as adaptive and unique and resourceful, and everyone is encouraged to embrace themselves and be who they are unless who you are is autistic, then you are encouraged to blend and those things that might help you or things that are useful to you that might be seen as creative in a non autistic and be famous on Pinterest, is now a seen as a nusaaunce accomidation and something you should adapt passed needing, and if you do for a little while then your expected to be able to all the time.But here is the thing that's not how our brains work, if we can sometimes manage with out a support that doesn't mean we no longer need or will benefit from it.</div>
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And I'm tired of it all</div>
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Everyone else is allowed to be themselves, and I just want to be me, and that's what I'm going to do, because I can't afford to burn spoons on pretending to not be me, </div>
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So I'm going to stim </div>
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I'm going to communicate in the way that works best for me (AAC)</div>
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I'm going to use visual supports</div>
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I'm going to rely on the services I need</div>
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I'm going to enjoy my souixie and the banshees, London after midnight, the cure, mission U.K., switch blade symphony,as well as non post punk bands and some metal </div>
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I'm going to switch between black clothes with reds greens and purples and earphones </div>
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I'm still going to carry my pikachu in my backpack </div>
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I'm going to swim and hike and go play at the park and do things I like </div>
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I'm going to study geailge (Irish) and build an Irish vocabulary in my AAC app </div>
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I'm going to hopelfully onday again partner with and use a service dog </div>
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I am Autistic </div>
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I am neurodivergent </div>
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I'm just going to be me and these things are parts of me.</div>
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I've never fit into anyone's boxes perfectly ever and I'm not going to </div>
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I'm just going to be me</div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-76702633521704277912016-06-01T03:32:00.001-04:002016-11-02T13:44:16.080-04:00The actual Autism crisis<div style="color: #454545; font-family: UICTFontTextStyleBody; font-size: 23px;">
TW all the trigger warnings an.iesm, death abuse, and pretty much everything </div>
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There is a very real and serious Autism crisis<br />
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Yes we do have and Autism crisis and it seems t be an invasive epidemic world wide! But it's not what you think! </div>
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The crisis isn't about "the rise in autism rates," something that is largely do to more awareness and understanding about Autism </div>
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No the crisis is invasive, frightening and dangerous </div>
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The Autism crisis is....</div>
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Am invasive lack of presumption of competence especially when we do not have or use verbal communication or when our verbal communication is deemed poor</div>
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It's the assumption that those who do use verbal speech need few or even no supports at all, and the reality their needs are often over looked, ignored and rarely accommodated</div>
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autistic communication rights are ignored, before we can have access to a full comprehensive AAC system we are often told to "prove it low tech first," when we don't use AAC 100 percent perfect right off that bay we are said to be in interested, many alternative communication methods are viewed as "con traversal and even when we are clearly typing on our own either the authenticity of out words or that of our diagnosis are called into question</div>
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The communication support needs of autistics with decent to excellent verbal skills is overlooked and ignored entirely</div>
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The fact that communication and verbal skills are seen as binary concepts</div>
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The fact that access to communication AIDS and a variety of methods of non speech based communication methods isn't seen as a basic human right for us,</div>
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The fact that people assume we don't communicate if we can't use or don't use verbal speech or an AAC </div>
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The fact we have to remind people behavior is communication </div>
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That children are expected to spend 40 plus hours a week in therapies designed to try to make us indistinguishable from our peers or as normal as possible while also getting other therapies and being expected to also go to school, childhoods stolen in hopes of making us seem normal </div>
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A growing number of dangerous and experimental treatments and abusiveAnd therapies in hopes of curing us, many of which would be considered child abuse with a non autistic child, prominent example is mms (mini ale mineral solution aka bleach fed to children and administered though enimmas </div>
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The fact that autistic friendly therapies are not seen as a priority and learning to pass as normal is even at the detriment of the autistic individual</div>
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The fact RPM isn't more widely available and I'm not sure if insurance will even cover it</div>
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The fact that stim suppression is considered a training goal even though stimming is critical for many of us</div>
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The fact that essentially dog training techniques are used as therapies on us to train us to act normal.</div>
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The fact there are therapy goals at teaching us to play "the right way" (aka the non Autstic way)</div>
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The fact it's seen as acceptable to talk about us like we aren't Ben there when we are next to you!</div>
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The. Fact that proper clump comorbidy in with being part of autism and don't look at them separately as additional things we have to deal with,</div>
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The fact that organizations that claim to represent while ignoring us when we say something is harmful and they will try to silence us and claim to speak for us while shutting us out, spreading fear and stigma. </div>
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It's the attitudes that murdering us is some how mercy, while our killers often parents and care givers are painted as victims and us the undo burden who they had to endure, our support needs and challenges are used to justify our murders, that when we are murdered the reports aren't about how it is an unspeakable act of cold blooded murder but rather about the struggles of our killers, </div>
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The fact society seems to send them message we and our loved ones are better off if we were never born or if we are dead</div>
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The fact that we have to fight for our basic human rights and those are often ignored.</div>
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The fact that parents showing videos of us at our worst to "educate" by posting about how hard and horrible autism makes their lives is seen as acceptable and our dignity and privacy not being valued especially in the face of parents talking about their suffering</div>
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The fact parents suffering matters more then the Barrie's that we face due to ableism and a societies attitudes about us</div>
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The pervasive use of functioning labels that paint an inaccurate picture about an autistic individual and our needs, capabilities and assets, </div>
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The using of functioning labels to silence and function shame autistics </div>
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The fact that being able to type is used against us to invalidate out voices especially if we type well (spoiler how well we type tells you nothing about what challenges, daily struggle S or impairments we have)</div>
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The fact that any small success or having certain life skills even if they are not as important as ones we struggle with is s used against us to silence us </div>
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The fact that functioning shaming is a thing </div>
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The voices of Parents " professionals and organizations being valued over those of actually Autistic people </div>
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The mere fact an autistic person can disagree with something or say "wow that's harmful," or "how would you feel if that was up you," to things like meltdowns p or personal care things being put out on the Internet for the world to see and 100 parents will jump in and attack or harass the autistic person, really all an autistic person needs do is disagree with the something posted by a parent, org or a non autistic and they get attacked.<br />
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The fact that there are amazing parents and family members out there who work to lift up Autistic voice, support neurodiversity fight for presumtion of comptenence fight agaisnst all the issues on this list to better the lives of their children and loved ones only to also be dismissed and told they have it easy and clearly don't know what "real autism is,'<br />
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this whole "this is real autism," thing often used by people who feel autism isn't being portrayed right often used as an attack on what they see as ?to happy a depiction" and ignoring the fact that autism is complex.</div>
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Autstic adults and children are constantly exposed to hearing terms like "burden," "crisis" "Broken," "lost," damaged and "trapped" in reference to us and being autistic and this is seen as ok while "valued," "competent," "life worth living," "being seen as a whole person," and any discussion of acceptance and understanding is seen as"glorifying autism," controversial and radical </div>
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The fact that people take offense to the Neurodiversity movement that basically say different neurology and disability is part of human experience, disabled people and people with different neurologist have a right to our basic rights, understanding supports we need and acceptance for who we are and it's ok to have different neurological make up and to have disabilities what ever they may be it doesn't take away from our value as a person</div>
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The insistence one use of mental age</div>
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The idea IQ test accurately determine anything really.</div>
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The fact that most of the funding for autism goes into studies about causes, prevention and prenatal testing instead of into studies on what services and community supports are most beneficial to autistics, to adult services and community support or to services for adults<br />
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The fact that April is often a traumatic time for Autistics as we are looded with harmful awareness adds that stigmatize us, stories of our peers treating us as humans and being praised for it and inspiration porn, and of coarse lets not forget the light it up blue which is a giant add for autism speaks that the autistic community has addressed as harmful and is the center of a massive boycott,<br />
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The fact that the autistic run and founded events in April for acceptance and understanding such red instead, the blog challenge, and a variety of alternatives to light it up blue are generally ignored drowned out by the things lifted above</div>
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The fact that services and supports for autistic adults especially in community supports are rare and hard to find </div>
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The fact most services cut off at 22<br />
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The fact most organizations providing service dogs for Autistics will not train them for adults and many are either scam or well intentioned but promoting and using practices/tasks such as tethering that are highly dangerous to both dog and he autistic individual. Even though there are a variety of tasks that guide and hearing dogs perform that can really help mitigate and manage sensory processing issues.</div>
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The fact that poor families, families of color and minorities and females are less likely to receive an autism diagnosis and the gender and cultural biases in the diagnostics and the autism field</div>
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The fact most people think of autism they depict a white male child often sad looking</div>
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The fact that even though every other disability community has pretty much realized negative awareness techniques and using pitty to get funds was wrong and damaging so they did away with it like in the 60s or 70s (it's 2 am I don't have the exact date more the spoons to look it up) up yet this is the main way fundraising is done in the autism community </div>
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The fact that electro shock is seen as a reasonable way to treat autism and is just reaching the fear in hopes of having it banned as I humane in the year 2016! Please FDA ban aversive shock therapy!</div>
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The fact sensory issues are rarely taken seriously </div>
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The fact that non autistics are praised for treating us like people</div>
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The fact we have to fight to be seen as humans </div>
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The fact that passing means our diagnosis is devalued and not means we are denied out autonomy </div>
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The fact that our sexuality is ignored<br />
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the fact that we spend hours in compliance training<br />
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the fact that having emotions such as anger, frustration and being upset while normal for everyone else is seen as being defiant and uncooperative,</div>
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The fact that autistic is used as an insult now by some</div>
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The fact that use of autistic is ignored and even painted are therapy </div>
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The fact that when autistic choose to use identity first non autistic people correct us and tell us how to talk about ourselves and insist we use person first.<br />
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The fact we are often given little to no autonomy </div>
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The rampant infantalization of autistics</div>
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The fact doctors still tell parents if we don't do X by age 5 we never will </div>
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The fact that the entire focus is to make us normal and not to accommodate us and help us grow with our strengths<br />
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The fact you can be denied an organ transplant because you are Autistic<br />
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the practice of forcing eye contact</div>
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The fact that the world tells us it's better we pass and burn ourselves out completely then we seem even a bit Autistic</div>
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The fact that our accommodations and needs aren't taken seriously and are often treated as not real or a burden</div>
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The fact that we are seen as tragedies not people </div>
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The fact it's 2-3:30 am and I can rattle these off the top of my head despite being half awake!</div>
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I know I am missing so many more!</div>
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This is the real Autism crisis<br />
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The real Autism crisis is how society treats us the Autism crisis is Ableism!<br />
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this is a crisis we must address and needs to be dealt with!<br />
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this is the Autism crisis Autistics face everydaay!<br />
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Image description white Germany Shepard wrappers in 2 blankets laying on a brown leather couch with head on a white pillow dangling back over the side of the couch</div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-46375091903694390412016-04-25T21:19:00.003-04:002016-04-25T21:19:34.906-04:00nightmares in grief. I dreamt about her again last night, this time i dreamed she ot loose and as it by a car before running off and vanishing, only to be found in our yard hours later in the dark, laying there breathing slowly dyingt taking her last breaths as i ran to her to old her only to have her lick my hand one last time before she passed, ever since nim died I have had dreams like this regularly each one is different but each time she dies or s dying and is often unable to stand or get up that part makes sense she could no longer stand or get up on her own our last day with her. I don't know what else to say here but i miss her.<br />
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Nightmares are pretty normal experience in general though they have always been a bit odd in how i have them. Ever since I can remember I have had very vivid, graphic and detailed nightmares often they varied in topic. they can be so bad that i wake and am afraid to sleep again. I may even get up and check the doors and try to calm myself enough by reading or watching comedy, or a favorite light movie to get back to sleep.for me nightmares have also always followed a pattern, I would go with out a single nightmare for weeks even months and then they would start, one night I would go to sleep and i would have a nightmare and from that moment on I would have nothing but nightmares for 1-2 weeks having as many as 4-6 a night then they would stop; and once again i would be nightmare free for a while until it started again. I still dont know why i have them in this sort of pattern and i still have them like this to this day,<br />
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Last year is among the worst year i have have experienced to date, if not the worst in all honest, because last year i lost 3 very critical members of my family, a cat Lorien (she passed unexpectedly, my service dog Nim and my mom all within a short span of time from each other,. since then i have been finding blogging pretty hard, i just struggle to know what to write anymore, but I know my grief is manifesting is not how others might expect. in fact i find it very hard to show grief around even close friends and family, but I plan to try and delve into that in another post at some point. One of the ways that it seems to be manifesting for me right now is in the form of nightmares.<br />
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I am experiencing the losses all over again in nightmares, this is happening with both Lorien mom and Nim, but often switching around with who, most common ones are mom and Nim., sometimes the events are nearly exactly as they happened and sometimes they are completely different but each time i wake up and i just break down. recently Nim has been the main focus of these nightmares, not surprising as i used to have nightmares about losing her even when she was alive, but it was different then, then i could call her up onto the bed, or more commonly tun around and wrap my arms around her while i cried myself back to sleep in the comfort knowing she was there and it was ok, Now i wake up and she is still gone, I can no longer just reassure myself "its fine it was just a dream," i cant simply "wake up and comfort myself that is will all be ok, because it isn't even if the events in the nightmare were far from what actually happened the end is still the same and waking up only serves to remind me at least one part was real.they are gone, one of my worst nightmares has come true, and now i relive her loss a dozen different ways in my dreams.<br />
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i dont know what else to say<br />
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-51642506128168615232015-11-01T11:14:00.000-05:002015-11-01T12:52:14.570-05:00Comming out, telling friends and family you communicate using AAC<div>
Recently I have found myself struggling in needing to talk to more family and friends about AAC and my need for AAC. It is something that for me is often scary, it is frightening to family and friends about your need or preference for using AAC to communicate. It is scary not know how they might react but it can be even more frightening when you do have some sense on how they might react, so for Autistic speaking day I want to talk a bit about coming out on AAC use.</div>
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For those who do not yet know AAC stands for alternative augmentative communication these are non speech based forms of communication, some examples would be Sign language, Braille, picture cars, letter boards and dedicated speech devices or tablets with communication programs on them, but so too body language, books, news letters, emails,, notes letters and even the Internet are all also forms of AAC . So in reality everyone uses a form of AAC, this is something most people don't seem to realize, and even though people almost everywhere use and even rely on some form of AAC daily, the forms autistics may use such as using a tablet to speak are all to often met with resistance </div>
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When it comes to Autistics who have little to no verbal speech at all Often we and our families struggle and have to fight to gain access to AAC. All to often there is a fight just to get AAC methods covered or provided through insurances or through school, there is all to often the idea that an autistic must prove we are capable or here before anyone is willing to believe in us, or to see us as capable and worth putting funds and efforts towards providing AAC, this is an attitude that needs to change! Often when a family wants to look into AAC for their loved ones they will be discouraged by being told it is to costly, their child needs to prove themselves first or worst of all they are "to severe" to learn or use AAC or it might "hinder the preffered verbal speech" this is something that has been proven to be wrong and it has actually been shown on several occasions that implementing and providing a comprehensive AAC system, modeling how to use it in many individuals has encouraged verbal speech development. But far more importantly it provides a path to communication and let's our voices be heard, even when a school or insurance provides AAC it can be a fight to get friends and family to accept the need for AAC, they may try and push for speech, AAC isn't valued like speech is and our basic rights may be Violated by having our devices or AAC tools taken from us as punishment especially when we are struggling, having a bad day or just are in a terrible mood!</div>
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While people might be familiar some with the struggles in getting AAC for those of us who are non verbal or minimally verbal, there is a side that is rarely known about and almost never discussed are the issues Verbal Autistics experience in getting access to AAC, as well as the issues we face in getting people to both understand and accept our use of AAC for communication. when we have some level of speech especially when people outwardly view our speech as being good or even exceptional speech we are not perceived as having any communication issues or challenges, and it is often believed we don't need and won't benefit from the use of an AAC device or system!</div>
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The truth is when we may seem to have adequate or even excellent speech we may still benefit from AAC and believe it or not in spite of having great speech in some cases we still may really NEED to have and use an AAC system. There are many Autistics I have spoken to and know many other Autistics who use AAC when they lose the ability to speak, something that many "verbal" autistics actually have to deal with, when this happens we can't speak period, this is a situation in that the need for AAC should be pretty clear! However people often will not believe that there is a real need for AAC and will often accuse us of "faking it", "seeking attention" or trying to avoid something by not answering when we truly can not.</div>
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For many of us despite having some speech or even having good speech we still struggle on a daily basis to use our speech to communicate and though it isn't obvious, things people assume we are able to do such as expressing our needs or describing things or events, we struggle to do so through speech and may be unable to express those things through speech even when we are able to tell you all about something we love, but through the use of AAC we are able to communicate these things far better then we can through speech. In fact there are many of us who have a brain body disconnect that means what we can get out of our mouth is far less then what we want to or are trying to express, and sometimes it will be in no way related to what we were trying to say at all, </div>
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this is something I struggle with a lot, I also tend to lose the ability to speak often in stressful situations but also in over load and sometimes for no reason at all. For me speech also causes a lot of issues and impairs my ability to process visual information, and actually causes many challenges and impairments for me that I have written about in other posts, for all these reasons, even though I gained speech after being delayed in speech as a child I gave up the use of speech except in a few special situations, this wasn't something I decided over night, it was something I put a lot of thought into and discussed with doctors therapists and a few close friends and family. I won't go into the whole story here as I have detailed it in another post, the short version of it was after a lot of work and testing it became clear my ability to communicate and do so effectively through AAC was significantly greater then my ability to do so through speech, we also found that after long periods with out speech a few areas I had severe impairments showed marked improvement though far from being completely fixed, things such as awareness of my environment coordination body awareness all improved, though I still struggle with them when I use verbal speech for a long time these become much more impaired. So it was agreed upon by my doctors, therapists, friends and family and even my mom! that inspite of having verbal speech i do in fact need AAC and I benefit substantially using it op as my main form of communication,</div>
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While I have the support of doctors, my mom and a few close friends and family, There are still people in my life who i don't typically see often or interact with much that I still need to discuss this with, and with whom I need to explain everything to, Until I am able to talk to them about this I often will turn my verbal speech back on when interacting with them, This can be hard for me to do and is very stressful, I often feel like I am hiding part of who i am from them and sometimes this can sen me into a spiral of doubt about my need for AAC, even though that is silly, it happens because the whole time I am with them i am trying to figure out how to explain it all to them, I am thinking about all the things they might ask or say and i need to plan out how to reply to those things and I also need to think about the criticisms i might get after explaining it all so I can be ready for them, I know this will take time for the people i am explaining it to to understand and process, so i worry about that too while scripting how to talk to them and all to often i fail at getting it out, So even though I have been using AAC for my primary form of communication for a while now I am still needing to discuss this with friends or family members who have known me for a while and who know me as being "verbal." I need to find away to explain this to them and hopefully help them understand and accept AAC as my primary form of communication and really how i need to communicate.<br />
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This is something that can be really hard to get people to understand. There are still people in my life who I still am struggling to get to understand, I know I am not alone in my struggle as a Verbal Autistic in having my need for AAC be understood and accepted, I know this is a struggle almost all verbal Autistics often have to battle with when they use AAC, weather it is for short periods, on occasion, as their predominant form of communication or to simply help them express themselves better when they feel it is something they can communicate better through typing; using AAC will often be met with resistance, doubt and criticism, Here are just a few examples of the criticism and challenges verbal Autistics that use AAC may face when using AAC or discussing their desire or need for AAC with friends and family </div>
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Criticism</div>
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"You don't really need that"</div>
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"Then they will never talk"</div>
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"Your faking"</div>
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"You may loose verbal skills"</div>
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"But I love your voice"</div>
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"It's inconvenient"</div>
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"Your just doing it for attention"</div>
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"But you never needed AAC before"</div>
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"You only have mild autism you don't actually need this" </div>
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"that us only for people who can't speak at all"</div>
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"You speak fine,"</div>
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"You don't really need it there are other with real autism who can't speak at all,"</div>
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"At least you. can speak" </div>
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"But it's so slow"</div>
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"But You can't use it while you work" </div>
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"But i know someone who has a relative with severe autism who can't use AAC or speak at all so you shouldn't use it, you don't really even need it"</div>
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Theses are only a few of them there are many more but I'm to tired to remember them. But these are things we often hear, when a verbal autistic comes out to you about needing AAC </div>
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remember when you send a text or an email out on Twitter or face book you too are using a form of AAC, everyone has the right to use their preferred method of op communication, </div>
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When I first came out to my mom she was very skeptical and I promised to use speech with her in private, with time she saw the difference using AAC made for me and the ways in wich it improved my ability to communicate and my ability to manage in times i would have otherwise not been able to, over time I have slowly come out about my need for AAC to others and I have had a mix of reactions.over time my mom not only accepted my use of AAC but she was very supportive of it and that meant the world to me! Still I have people I need to come out to about my need for AAC and that scares me, I worry they won't understand, but I can't keep using speech with them just because I am afraid to talk to them, it isn't being true to myself, it is harmful for me to do so and it takes resources I need just to be able keep up the verbal speech for them. </div>
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Coming out as an AAC user is hard and scary especially if you have verbal speech,but we need to be able to come out to you, Please keep in mind not to use any of those phrase I listed in criticisms </div>
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The truth is most of them are wrong and all are damaging. Many of them comparing the verbal autistic to another autistic you perceive as having it worse are not only hurtful they are degrading and insulting to both autistics, the verbal AAC user and the autistic you view as more severe. Both have equal right to AAC, everyone has the right to their preferred methods of communication, please also remember just because someone can't speak it doesn't mean we aren't communicating! Behavior IS communication!! Presume competence in all cases of autism!! I can't stress this enough!</div>
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Please do not compare us to other autistics to dismiss our challenges that's not ok and it is degrading to them overlooking their strengths and their value as a person. the truth is if we are coming to you and telling you we want to use AAC or that we need it, it is because we do need it, please understand this isn't for attention and we do have real challenges you aren't able to see yourself, telling you about our need for AAC is terrifying and what we want and need the most is your support and understanding. It means everything to have that. what we truely want and need most is acceptance, even if you may not agree with it please do your best to be understanding, trust us and supportive. The thing we need most is your Acceptance not judgement.</div>
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Thank you</div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com3tag:blogger.com,1999:blog-8453970511785136356.post-46369512979541680992015-07-17T21:23:00.001-04:002015-07-17T21:29:44.906-04:00Crusading against hate! autis, speaks founders are NOT heros! <span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 23px;"> </span><span style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); background-color: rgba(255, 255, 255, 0); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 23px;">hello,<br /><br /> Recently People magazine featured bob and sussan wright as "heros among us" They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly<br /><br />Bobs and Susan wright are NOT heros! </span><br />
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<li><span style="background-color: rgba(255, 255, 255, 0);">there is nothing heroic about dehumanizing Autistics!</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">there is nothing heroic in spread fear and stigma for your personal gain!</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">There is nothing heroic about fighting to keep autistic advocates out of the discussion of autism</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">there is nothing heroic about make an entire group of people feel like burdens and curses to their family!</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!</span></li>
<li><span style="background-color: rgba(255, 255, 255, 0);">There is nothing heroic about painting parents and caregivers who murder autistics in their care as victims faced with a horrible burden and turning the murder victims into the villains! There is nothing ok about demonizing the person who's life was taken from them and turning the killer into a matter in a cry for more help!</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">There is nothing heroic about promoting organizations known for severe violations of human rights like JRC</span></li>
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<li><span style="background-color: rgba(255, 255, 255, 0);">Bob and Susan wright are NOT HEROS!!! Autism speaks hurts <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/actuallyautistic?source=feed_text&story_id=790075751836"><span class="_58cl">#</span><span class="_58cm">actuallyAutistic</span></a> people! the little good they have done pales in comparrison to the pain suffering, tears and harm they have caused building barriers of fear between Autistics and the community! Period!</span></li>
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<tr><td class="tr-caption" style="text-align: center;">white German Shepherd behind "boycott Autism Speaks" written in chalk</td></tr>
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<span style="background-color: rgba(255, 255, 255, 0);">People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics</span><br />
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<span style="background-color: rgba(255, 255, 255, 0);">people magazine the very title og your article was steeped in ablism, in ignorance and clearly designed to creat fear, fear of autim, T</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">My mom recently passed and I miss her more then anything one of her biggest fears was that my disability would mean my life would be valued less, she feared what societies view of my value as a person, or more appropriately lack of value in the eyes of a society that sees me as nothing more then a burden, would permit others to do to me, what rights would be allowed to be stripped from me because I was seen as worth less and a burden due to my autism, and most of all she feared if politics went really messed up I would be on a list of burdens to cull from humanity due to my disability, and while that last sentences sounds pretty extreme and unlikely the rest of her fears were valid. And they are valid because of how autism speaks spreads awareness, because of how you portrayed autism in your Article,</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">Painting autism as something to be feared, to be battled paints autistic as less, so often you hear parents of autistic kids fearing what will happen to their kids when they die, well how you speak of autism will effect the answer to that directly, The message you send to the world is about autism and autistic is how autistics will be viewed. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">If the message is that we are drains, burdens and that we destroy the marriages and live of our families then people we see us a such and they will view us as less then human. And in the words of a friend of mine </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">"Here is the problem with the fear rhetoric, it makes people afraid it dehumanizes those living with this disorder, it enables people to see them as less and that is very dangerous!!, extremely dangerous! When you view someone is less it is easier for people to do all sorts of awful things to them, use them as experiments, rape, kill or lock away in some institution where not even their basic needs are met left to sit in their fecal matter. If we present our children and loved ones as burdens then that's how they will be treated! No on will want to help them, they will be seen as drains and their value will be lost to others. And al the things I listed above will continue to happen as they do today! How can we expect society to help and stand up for our loved ones when we are telling them our children are nothing but a problem, a burden and saps on the economy! " (S,D)</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">No one with autism no matter how mild or severe is less than human because of their challenges, challenges don't take away from your humanity!</span></div>
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Everyday autistics around the world hear how they are burdens, drains, need fixing, our murders are excused, we are told everyday our lives are worth less and burdens to our non autistic loved ones, at the same time our voices are silenced by organization like autism speaks when we try to speak up and say we are here we matter, </div>
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Bob and Susan wright are not heros their organization shuts out and fights to silence autistics and silence our voices, they spread stigma and fear and excuse murder that is not heroic!</div>
<span style="background-color: rgba(255, 255, 255, 0);"><br />if you want to feature real heros look at the Autistics and our families who are fighting for acceptances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonetization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard! So if you want to highlight heros highlight Autistics, high the parents and allies in autism acceptance who support neurodiveristy and acceptance those are the real heros!!</span></div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com3tag:blogger.com,1999:blog-8453970511785136356.post-70301660572817101072015-07-02T15:22:00.002-04:002015-07-02T15:23:06.156-04:00They are not Heros! a post to people magazine on Autism speaks<div class="_5pbx userContent" data-ft="{"tn":"K"}">
hello,<br />
<br />
Recently People magazine featured bob and susan wright as "heros among us" They got a huge cover page and a story of coarse but here is the thing People if you had done a little research first on your subject matter you would have learned very quickly<br />
<br />
Bobs and Susan wright are NOT heros! <br />
<ul>
<li> there is nothing heroic about dehumanizing Autistics!</li>
<li> there is nothing heroic in spread fear and stigma for your personal gain!</li>
<li> there is nothing heroic about make an entire group of people feel like burdens and curses to their family!</li>
<li> there is nothing heroic about SHUT OUT the people you claim to speak for and silencing their voices!</li>
<li> there is nothing Heroic of parading parents in front of a screen to cry and say how much their child has ruined their lives!</li>
<li> their is nothing heroic about demonizing Autism and fighting against autistics that want acceptance, and understanding</li>
<li> Bob and Susan wright are NOT HEROS!!! Autism speaks hurts <a class="_58cn" data-ft="{"tn":"*N","type":104}" href="https://www.facebook.com/hashtag/actuallyautistic?source=feed_text&story_id=790075751836"><span class="_58cl">#</span><span class="_58cm">actuallyAutistic</span></a>
people! the little good they have done pales in comparrison to the pain
suffering, tears and harm they have caused building barriers of fear
between Autistics and the community! Period!</li>
</ul>
People magazine you may ot have realized this but by featuring them as heros and battling autism as a good thing you too have contributed to the steriotyping, dehumanizing, demonizing and spreading of hate and fear towards Autistics<br />
<br />
if you want to feature real heros look at the Autistics and our families who are fighting for accetances, understanding and supports that actually benifit autistic people.look at people fighting the stigma and demonization of Autism because in a world the tells you we ar lost, broken and burdens the true heros are the ones who stand with us in love support and acceptances who lift up our voices, We are not broken, we are not lost we are here we matter and we deserve to be heard!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw0Zd7s9z73cD8xwD0hHGqWr5yBe-gVgqbBFMrVAL1iAC2H9NK0f1df496GhMTsNYHUNLWL8slTdHdRRSBBbWjg_tIpeloh1qBFlDh3OY1nXe5oUoVqaRNqDGhZfIl9ekUQc_OviqhqMI/s1600/bycottautismspeaks.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw0Zd7s9z73cD8xwD0hHGqWr5yBe-gVgqbBFMrVAL1iAC2H9NK0f1df496GhMTsNYHUNLWL8slTdHdRRSBBbWjg_tIpeloh1qBFlDh3OY1nXe5oUoVqaRNqDGhZfIl9ekUQc_OviqhqMI/s320/bycottautismspeaks.jpeg" width="272" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Whit German Shepherd standing next to large chalk writing that reads "boycott Autism Speaks!</td></tr>
</tbody></table>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-46161236095407761242015-05-19T13:35:00.001-04:002015-09-25T20:32:42.172-04:00The need for a better case for Ipads used as AACHello,<br />
<div>
<br />
This is an updated version of my blog post "the perfect Ipad case" When I wrote that post this was the case I was using<br />
<br />
Ipad have helped give many Autistics and individuals with many other disabilities a voice, but ipads are often very fragile and break easily as result many of us but special cases to help protect our voices. over the years I have searched for the best ipad and while there are many great cases but there does not to be any cases with all the features many of us need. below are discussion of the 2 cases I have had with their pros and cons followed by a list of features for the most ideal Ipad case for an Ipad being used as an AAC device</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghvp4K5Xcox8EPFABzx4WeMzl_8GsXbw0wzRWeC_r45mvQ90nGahJceanErfqMGJwtKFOc8MOuUaBNbY9WFOpFqrFCjVPmE3KkpQ2a6oY53n8yKF3j-J4RIWlpqaTIJ8_1BeCxcFLQwB0/s640/blogger-image-1665542990.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghvp4K5Xcox8EPFABzx4WeMzl_8GsXbw0wzRWeC_r45mvQ90nGahJceanErfqMGJwtKFOc8MOuUaBNbY9WFOpFqrFCjVPmE3KkpQ2a6oY53n8yKF3j-J4RIWlpqaTIJ8_1BeCxcFLQwB0/s640/blogger-image-1665542990.jpg" /></a></div>
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As you can see it was a really nice case and had many great features to it.</div>
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<div>
1.
It is very durable -it does a good job protecting my ipad mum the ever
frequent accidental drops, falls, bangs into walls and waps from the
over excited Nimrodel's tail when I return home!</div>
<div>
<br /></div>
<div>
2.
It has a handle!!! - I absolutely love the handle feature to it!! I
use the hand frequently and ad you app an see I have also used the
handle to add features to the case it didn't have.</div>
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<br /></div>
<div>
3.
It is soft! -What you can't tell from this photo is that this case is
actually a soft rubbery sort of material, (though the teeth marks on the
handle might give a hint to that if you can see them!) The soft
material means it doesn't hurt as much when it bangs against my sides,
it bounces off of hard surfaces realtivly easily and when it does it
isn't very loud! At night I hang my ipad up on a hook to charge and I
do feel that the softer casing makes this safer for the wall.</div>
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However it did have some very clear drawbacks for<br />
<br /></div>
<div>
. the fist is a major drawback and by far the biggest is that it is not
water proof. For e this is a feature that I really need. Using an ipad
for communication as well as everyday basic living I need to be able to
take out and use my ipad in the rain with out worrying about it getting
ruined in the rain! A water proof ipad would also enabled me to hanging
it up in the shower or be able to use it while spending time in the
pool, fishing or any activity that may cause the ipad to come in contact
with water.</div>
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<div>
2 it doesn't have a screen protector-while this can be bought at a store I do wish there was one a part of the case.</div>
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3
it doesn't boost the sound- this is another big one for me. Using the
ipad for an AAC device means I need it to be able to be heard in public
so if the case could boost the sound (especially if it could do it
significantly would be highly benificial!<br />
<br />
<br />
A few months after writing this I got a new case, I got the Life proof case for my Ipad and I have really liked this case,<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLNlEC-so1T4bXtIgmNGswgcOKKmHgx7upR-7jZ-zyBAXK2ZWvQrW0CpOoKZNW8h1NLdOS8CYqgmm_IJ6qwYESF82ORN-RcSgOd0p_h5FDsVbr1LHzZcMSSmW_9yvTexp_Ao-IIBPJdAA/s1600/AACdevice.JPEG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLNlEC-so1T4bXtIgmNGswgcOKKmHgx7upR-7jZ-zyBAXK2ZWvQrW0CpOoKZNW8h1NLdOS8CYqgmm_IJ6qwYESF82ORN-RcSgOd0p_h5FDsVbr1LHzZcMSSmW_9yvTexp_Ao-IIBPJdAA/s320/AACdevice.JPEG" width="320" /></a></div>
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the plus<br />
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it is durable,<br />
waterproof ( though I did have a life proof case leak on me twice so im looking into back up)<br />
and holds up really well to being dropped </div>
<div>
<br />
<br />
(a few of the down sides)<br />
<br />
<ol>
<li>no built in speaker (explained above)</li>
<li>you have to buy the strap separately</li>
<li>Flimsy strap attachment, the connectors for the strap are loops that are relatively easily
broken ( I can go through them in 2 months or so, this is a pretty major
down fall) *see images below*</li>
<li>no built in screen protector (though my screen has held up well an
glare resistant protective would be very useful and help reserve battery
life)</li>
<li>while i can use my head phones o have to use a wire adapter thing cant explain better but the headphones are prone to slip out</li>
<li> I have had a few leaks with past life proof cases especially with my phone but over all this isn't that common</li>
</ol>
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<div style="text-align: center;">
The life proof strap attachment</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjByV5_zLTUJEsToPAjXwqnErP8P9r4FkiexZFR-5fXZW5Kp7IhhS8g8ucmA9TD193IdA7AqDH1N2g6bi63htWRB-Ouqt0J0_IH7QHOwfAx-UshqnqufH9MI58rfNIH7CHp3-49Kzscv8/s1600/20150526_221853.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjByV5_zLTUJEsToPAjXwqnErP8P9r4FkiexZFR-5fXZW5Kp7IhhS8g8ucmA9TD193IdA7AqDH1N2g6bi63htWRB-Ouqt0J0_IH7QHOwfAx-UshqnqufH9MI58rfNIH7CHp3-49Kzscv8/s320/20150526_221853.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYt94B8AUbwz-yYybvXDe7VwdOMUS4KmLS10-zs8v6VDNDxR-6KnjR9M1qrXPNJUVZxqixKwYzWzaINQzCLjPqyw88hZs_Ty_TcxEu9PoeJT8IatfqCCi_9YpzNhhSA7Rwnu6E6fAX4os/s1600/20150526_222012.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYt94B8AUbwz-yYybvXDe7VwdOMUS4KmLS10-zs8v6VDNDxR-6KnjR9M1qrXPNJUVZxqixKwYzWzaINQzCLjPqyw88hZs_Ty_TcxEu9PoeJT8IatfqCCi_9YpzNhhSA7Rwnu6E6fAX4os/s320/20150526_222012.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhND6z5tRXfqBShNPPwAAJwqcsp8YiCKG8BO8c2MUzdO7KbrJJANSvI87C60FeJs9OcLRtbB22ij31AU-qBP2LlX8lKjCXg16Uy6aGtptJxCPCPDzgZHxZPan8fXbBvDHO1emSOY1eqsn0/s1600/20150526_222427.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhND6z5tRXfqBShNPPwAAJwqcsp8YiCKG8BO8c2MUzdO7KbrJJANSvI87C60FeJs9OcLRtbB22ij31AU-qBP2LlX8lKjCXg16Uy6aGtptJxCPCPDzgZHxZPan8fXbBvDHO1emSOY1eqsn0/s320/20150526_222427.jpg" width="320" /></a></div>
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<ol></ol>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9-6bAsm4pp3Xwm1OEjF5WnAJlYvsKo_y8qT2uCnmgXBRlNx0_3vQMuzodQBhETUNSDlLYVe5qq-LPCvkxUpm7H3cqiMZoYipZbwvx9hbdJ2zap-WhSeXE-1_5GhWKiLCP9jad2QUNPxo/s1600/20150526_222451.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9-6bAsm4pp3Xwm1OEjF5WnAJlYvsKo_y8qT2uCnmgXBRlNx0_3vQMuzodQBhETUNSDlLYVe5qq-LPCvkxUpm7H3cqiMZoYipZbwvx9hbdJ2zap-WhSeXE-1_5GhWKiLCP9jad2QUNPxo/s320/20150526_222451.jpg" width="320" /></a></div>
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Another flaw with this case is the audiojack access, while it holds up well being able to use the audio jack require you use an adapter, that is an issue where the adapter is flimsy, as it screws into the case and is pretty much a cord that you plug your head phones into, this can get in the way and be easily broken, (see photos below) , ideally this could be fixed by making a water proof no cord based adapter, that seals the case but can remain inside the case with out risk of breaking or causing obstruction when positioning the case, </div>
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The normal port seal gasket thing a round lack pla skit thing with screw threads and a yellow gasket</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwiPAs2EAa2F860qSR4ojR8W52JrkOseGw8uZelzrLHgCS6QSsZoY-l9OzsQCcw7tHva-QYd5VIWEnOlsVsk2MINag3rt6bTxZfYKfEgDJdHiPhkOa_44FClorWlVo4XBdcS0qO6t3-ac/s640/blogger-image--1229212581.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwiPAs2EAa2F860qSR4ojR8W52JrkOseGw8uZelzrLHgCS6QSsZoY-l9OzsQCcw7tHva-QYd5VIWEnOlsVsk2MINag3rt6bTxZfYKfEgDJdHiPhkOa_44FClorWlVo4XBdcS0qO6t3-ac/s640/blogger-image--1229212581.jpg" /></a></div>
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The poor gasket inside the case viewed from the inside of the case</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOAW-oKbZtnOq9U_XAWrgOh36ewIBPEoRyMW2h9kiEKaeAeot6ubXv1bqN37fX4IOCgpzxtn1Cs6VkNcuzallAqtSuQ0fMODHG0-6ywdghkCGUeweYHEm_x0r_0EGyrmSLoJ2bJf5Nd9E/s640/blogger-image--135387803.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOAW-oKbZtnOq9U_XAWrgOh36ewIBPEoRyMW2h9kiEKaeAeot6ubXv1bqN37fX4IOCgpzxtn1Cs6VkNcuzallAqtSuQ0fMODHG0-6ywdghkCGUeweYHEm_x0r_0EGyrmSLoJ2bJf5Nd9E/s640/blogger-image--135387803.jpg" /></a></div>
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The cord adapter to be able to plug in the head phones mes with a holder attached for the gasket<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAxuo-LFcTUsUuSatDGpseHPaNRX-WDtoAGqiOiJOwj3HxQCal79iSAapMtYG82IhcTRLZBvIq2-ZkrrkAnvcqGZWoUYImr4SO8ibnw7mhkNzuYWwdIA7Bedt8VDdwMvLFTDXCxrcCnTU/s640/blogger-image--1679071198.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAxuo-LFcTUsUuSatDGpseHPaNRX-WDtoAGqiOiJOwj3HxQCal79iSAapMtYG82IhcTRLZBvIq2-ZkrrkAnvcqGZWoUYImr4SO8ibnw7mhkNzuYWwdIA7Bedt8VDdwMvLFTDXCxrcCnTU/s640/blogger-image--1679071198.jpg" /></a></div>
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The end of the adapter cord male plug in<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKBigwhZI0RPxU33D4sjJXNbA0JXZL4MHf6PmmLLRj2HzlrxLU7psZWPgKDwv97ZUNXvxkaqhdaiOCCh8fCk6GU13oFgCAHYg6cy_TPg2sHckrlb33kPO9e3ki27cgfWheED9hoDRbL_w/s640/blogger-image--2085782588.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiKBigwhZI0RPxU33D4sjJXNbA0JXZL4MHf6PmmLLRj2HzlrxLU7psZWPgKDwv97ZUNXvxkaqhdaiOCCh8fCk6GU13oFgCAHYg6cy_TPg2sHckrlb33kPO9e3ki27cgfWheED9hoDRbL_w/s640/blogger-image--2085782588.jpg" /></a></div>
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<div>
<span style="font-size: large;"><b>So what would be the perfect ipad case? (most important ones are highlighted)</b></span></div>
<div>
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<ol>
<li><b> MUST be FULLY water proof protect against being submerged at the deepest depth and longest time possible!</b></li>
<li><b>be able to float</b></li>
<li><b> It MUST' be able to protect the ipad against, drops, falls, being thrown, stepped on and run over!</b></li>
<li><b>Shock resistant,</b></li>
<li><b> Built-in high quality Speaker with well Amplifies sound- this is crucial when using the ipad as an AAC device! *This MUST also be waterproof) </b>one of my biggest issues is the need to have an extra Bluetooth speaker that can be heard in large crowds this means i have extra weight to carry and adjust to ideally a case should have a speaker loud enough this is no an issue)</li>
<li><b>Have a built in Screen protector *ideally glare resistant*</b></li>
<li><b> Have a handle and a good strap!</b></li>
<li><b> Should have a soft outside (if possible but the handle should defiantly be soft)</b></li>
<li><b> Light weight </b> </li>
<li><b>Will NOT interfere with with wireless signal or blue-tooth</b></li>
<li><b> affordable!!!!! Seriously this shouldn't cost the same as a new ipad! Ideally this case won't cost more then $200</b></li>
<li><b>Easy access to ports and have a way to use the ports and remain waterproof</b></li>
<li><b>crush resistant/ crushproof </b></li>
<li><b>Has a stand and has mounts you can buy and use </b></li>
<li><b>MUST be available for Apple, Android, Kindel and other non apple Tablets phones and other AAC applicable proucts! </b></li>
<li>Fire resistant</li>
<li>Home screen protector , (it would be good the be able to block off the
home screen button so it isn't accidentally hit and close out of app )</li>
<li>Come in many different colors!!!!</li>
<li>ideally the ability to have a softer outer case that can be bought as an attachments for easy gripping. </li>
<li> have a cover (otional)</li>
<li><b>light weight</b> </li>
<li>Bonus points if it has some way to make charging iPad wireless possible (not sure it that's a thing)</li>
</ol>
<div>
<br /></div>
<div>
These
are features that would be beneficial to many on the autism spectrum
and using their iPads as aac devices or just as a general life
organizational and maintenance tool. It is crucial that these device be
able to be used in a multitude of various environments and impacts. I
pads are very expensive and when your ipad is your lifeline it really
needs a case designed to handle everything life has to throw at it.. I
really hope that someone could make this case and have it available to
everyone! </div>
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</div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com6tag:blogger.com,1999:blog-8453970511785136356.post-4587130157182162942015-05-15T22:59:00.001-04:002018-04-18T16:44:21.726-04:00NotSpeaking Not Silent Acceptance, Love andSelf-care: #AutismPositivity2015<!--[if gte mso 9]><xml>
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I am autistic and I work hard to bring change, I fight for acceptance
and fight the stigma of autism, I fight to bring reform to autism service dogs,
I fight to get the Mason alert in place, I fight to promote acceptance and
under standing and I fight for the right for preferred communication method and
the right to AAC and providing a communication alternative to autistics as soon
as possible,<br />
So what is acceptance?<br />
Acceptance is not giving up, acceptance is a
starting point, acceptance is what allows us to make real progress,<br />
Acceptance is what leads quality of life<br />
Acceptance is no longer working against
myself but working with my abilities and limits to reach my potential in
acceptance I a, no longer working to be normal I am working to be successful
with what I have, it is about supporting myself where I need supports and building
on my strengths,<br />
Acceptance is so important for the autistic community, when we are accepted
our accommodations we need are seen as known, standard and logical, we are
viewed as important an valuable. We are t painted as burdens but as autistic people
who have our own value.<br />
<br />
Right now advocates have to fight to promote acceptance, and it is not the
norm this means thousands of autistics live hearing they are burdens, broken
and need fixing when they need to hear they are autistic, they may need help
and supports but that's ok, they have a right to supports, in stead of
focusing on fixing them and making them normal the focus needs to be on giving
us tool that help us communicate and be successful<br />
<br />
Acceptance is recognizing communication and communication needs are
different for everyone, AAC is seen as a basic right and not a last thing to
try but instead an important first step<br />
<br />
Over this year I have been working hard to be a good advocate, I advocate
for autistic rights, for the Mason alerts and for reform for autism service
dogs these can burn me out on top of this I have lost 3 loved ones this
year so selfcare has become critical for me but what self care is changes with
acceptance<br />
<br />
When people talk about self care, it is often
in the context of daily living activities such as teeth brushing, taking
medications, showering, eating dressing ect, areas in which I experience many
moderate to severe defficates, but self are is so so much more and takes on a
larger meaning when you have reached acceptance and maybe one of the most
important things when it comes to acceptance and when it comes to self
advocating<br />
<br />
<br />
For me acceptance and self care means I
recognize my limits, it doesn't mean I have no issues in defficates in
self care but rather that I recognize that I need help with my daily care
activities and I recognize I do need help,<br />
<br />
For me acceptance and self care is about
recognizing my limits<br />
<br />
Self care and acceptance are not burning
myself out trying to be normal, <br />
<br />
Self care is doing what Is right for me<br />
<br />
It means Giving up one skill that takes so
much from even when it is something others prefer,<br />
<br />
<br />
It is recognizing that what is right for me
isn't what others prefer and not everyone will accept or agree with but
something I need to do for me<br />
<br />
Acceptance and self care is using AAC in
favor of speech<br />
<br />
It is not being ashamed to be autistic and
realizing I'm not broken, ivy brain works different and I need to do what is
right for me and not what makes everyone else happy,<br />
<br />
Today self-care and advocacy means not
writing the perfect blog post but writing a short choppy blog as best I can and
working on a better one another day<br />
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-59592479070733050262015-04-15T16:04:00.004-04:002015-10-26T22:33:28.151-04:00please stop Assuming- what your assumptions of disabilit based are wrong<span style="font-size: small;"> </span><!--[if gte mso 9]><xml>
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<![endif]--><span style="mso-spacerun: yes;"> <span style="font-size: small;"> </span></span><span style="font-size: small;">Please Stop
assuming</span><br />
<div class="MsoListParagraphCxSpFirst">
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Please please stop assuming i"m independent, well off, mildly affected have the
easy form of autism "high functioning " or whatever else you want to
call it! Just because I post and advocate on the Internet! And STOP Shaming
autistics who do have independence or a milder form of Autism! Stop using it to
take away their voices!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Ok I am going to be straight forward here and honest As I don't like posting
about my challenges on social media, I like to keep them private this in no way
means I don't have them! Yet somehow people assume I dont. Here is the thing I
don't fit neatly into your little box and most Autistics don't!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">All too often people see I write blogs, they see I use social media, that I'm
trying to get a bachelors degree and I am engaged and they use this to make
assumptions about me and decide I am to mild to have significant impairments
from my autism, they assume I am not severe enough and so my opinions dont
matter, what you don't realize is my fiance is also disabled has ADHD and likely Autistic
too, I am going to school because that's what my transition plan was and that's what
I know how to do, I have been doing it all my life, if I get my degree I have no
idea what I will do after that, so let's out this all out on the table then
once and for all!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">The truth is......I'm actually pretty damn disabled</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Driving-NOPE</span><br />
<span style="font-size: small;">First off I can't drive a combination of sensory issue, trouble focusing,
delayed reflexes make this something I just flat out cannot do!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Face? "Who are you?....oh right your my parent"</span><br />
<span style="font-size: small;">I can't recognize faces out of context, not even my own mother! I have to use
other ways of identifying people! I use hair, clothing, context and smell. So
in class I can recognize my teacher but if she cut her hair I wouldnt know who
she was and would panic when she started class because I would see her as
someone else and I would walk out and franticly try to figure out what day it
was, was i in the right building? Was class canceled? Did we switch class rooms
where is my class? When my fiance cuts his hair i often cry and feel uneasy
around him for the next week or two, a few times I almost walked off with
someone who had a similar hair cut and outfit to my mother!</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;"><br /></span>
<span style="font-size: small;"> ADLs/self care</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">In my last neuropsych performed last summer or fall on the ABASS ll I
scored over all in the "extremely low range" and never received above
a "borderline" in any of the categories within!" And we were
being generous because the truth is most everything on their we checked off as
"yes" needed a side note of "with help, supervision and
prompting" there are many things I can do I have learned to do I don't process
to do without frequent prompting from eat, brushing my teeth taking, my meds
putting on *clean clothes*, <span style="mso-spacerun: yes;"> </span>to doing
homework, <span style="mso-spacerun: yes;"> </span>cleaning my room and basic
chores, if I don't have someone prompting me to do these things on a regular
basis they generally don't happen and I will go months without brushing
my teeth, weeks wearing the exact same outfit only remembering to change my
under bits every few days, Even though I have and thrive and NEED routines to
survive I need prompting to start them,<span style="mso-spacerun: yes;">
</span>I really heavily on a picture schedule app just to get me through my
mourning routine, because just getting up and getting ready is often a
confusing and overwhelming tasks, but the picture schedule only serves as an
aid to help me get started. I without someone prompting me to open my picture
schedule I will sit for hours confused and unsure what to do first or how to
get started. Before when I had Nim this was only a bit less of an issue since she
would always wake me, we had our walk together and then i would come home abd
be mostly able to remember to start my picture schedule, but even this wasn't
100% think more like 40 % after Nim died, my world fell apart, and
"functioning" became even more overwhelming. Nim was no longer there
to signal me and opening my schedules became painful as her care took up a good
50 percent of my daily routine Without Nim I need now more than ever to have
someone to prompt me to get started on those basic daily rituals.<span style="mso-spacerun: yes;"> </span>However the visual schedule isn't enough, as
if something interrupts me or there is a suddenly new step or obstacle (like no
clean bowls for breakfast) I will become stuck and begin pacing back and forth
and unable to move onto the next thing and may become so overwhelmed with
confusion i meltdown. having someone there prompting me helps me get back on
track and will often help get me through meltdowns so i can rearrange and
figure out an alternative, without this help remain stuck for hours, This is
all simply trying to get ready for the day, but it is by no means the<span style="mso-spacerun: yes;"> </span>end of it, these issues and challenges extend
throughout the day and a simple break in routine or expected plans can cause me
to get stuck and become completely non functional.</span></div>
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<span style="font-size: xx-small; mso-spacerun: yes;"> </span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: xx-small; mso-spacerun: yes;">
</span><span style="font-size: xx-small; mso-spacerun: yes;"> </span><span style="font-size: small;">Sensory issues also play another
role in impairing my basic ADLS , One of the reasons tooth brushing is a major
issue for me other then remembering to do it and not knowing how to do it right
or how long to do it tooth paste is also an issue. Most toothpastes burn when I
use them and so I must have a very specific type of tooth paste or I cannot
brush my teeth. <span style="font-family: "Arial","sans-serif"; line-height: 115%;">While I love showers and
bath but the feel of towels on my skin after sends a horrible sensation through
my body and if the towel rubs on itself i get horrible sensation in my
teeth like i had bit into it that makes my body shake and can cause panic and
overload, some days it is<span style="mso-spacerun: yes;"> </span>enough to cause
me to shut down and break into tears until i can get my body to restart and be
able to move on, this is another area where "having someone there"
can make a difference between out for an hour or two and getting through it in
30 to40 minutes as they will be able to help by stitching the towel for
blankets and then be able to provide a deep pressure that can help get me
restarted. After showers and baths i have to be completely dry before i can put
on clothes, this is less of an issue with shirts and sweat shirts for me as it
is pants, putting on pants while my lower half is not yet dry will also send my
system into a sensory mess, This will also cause a long lasting sensory irritant
throughout most of the day while my pants and skin fully dry.<span style="mso-spacerun: yes;"> </span>Sensory Irritants are things not bad enough
to cause overloads and meltdowns on their own but drastically increasing the
risk of something else triggering them and that something else can be something
very simple a minor and even something i may not normally be affected by. <span style="mso-spacerun: yes;"> </span>New freshly washed clothing can also cause
issues as it often feels tighter to me which is another sensory irritant and
they take several hours to a whole day to feel comfortable in. Sensory issues
cause many impairments for me and affect many things like sleeping, eating, dressing
and where I can and can't go or do and<span style="mso-spacerun: yes;">
</span>there are many of them and they are complicated. In fact sensory issues
can make up their own <span style="mso-spacerun: yes;"> </span>pos entirely t so
I will only use these few examples</span></span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: small;"><br /></span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: small;"><br /></span>
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">Eating</span><br />
<span style="font-size: small;"><br /></span>
<span style="font-size: small;">If I have someone helping making and cooking meals for me i can mostly be okish
with this but in general I am not, this is another area where I need a lot of
prompting as I often do recognize when I am hungry until i'm having headaches
and feeling shaky and emotional, even then if there isn't something easy
to heat or just eat to I often won't eat because I can't figure out what to
cook or where to start so I become over loaded and wander off and meltdown
until I am exhausted and pass out or find a way to forget my hunger until the
option of easy food becomes available Another common issue I have is when i am
hungry but there is nothing my mouth will accept or will want to eat so<span style="mso-spacerun: yes;"> </span>i gain will wander off and not eat
anything.<span style="mso-spacerun: yes;"> </span>There are a few things I can
cook on my own but all to often I get overwhelmed by all the steps involved
just like ith my moning routine and without someone there to prompt me i will
not make more then one meal a day, though even this can be risky as i tend to
forget im cooking and have left things on the burner, I find if i have premade
meals or things easy to make like chicken nuggets I am a bit more likely to
eat. However getting food is often so overwhelming I generally dont Eat</span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: small;">Other issues I face arround food is texture
,taste and swallowing.<span style="mso-spacerun: yes;"> </span>As is to be
expected there are certain textures and seasonings i can't eat, my body has strong
reactions to them where my throat will refuse to swallow them and no matter how
hard i try i just flat out cannot eat them some examples are, many nuts, mashed
potatoes, tofu and anything spicy Even when I can eat foods I like they I
always need a drink as food gets stuck in my throat really easily and some
foods that I like and can eat just fine may be more likely to be regurgitated
(not something I can control) </span><br />
<span style="font-size: small;"><br style="mso-special-character: line-break;" /></span>
<span style="font-size: small;"><br style="mso-special-character: line-break;" /></span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: small;"><br /></span></div>
<div class="MsoListParagraphCxSpMiddle">
<span style="font-size: small;">Other areas I have impairments</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Brain body disconnect (this means my body doesn't
fully obey my brain and causes impairments in communication, writing, ADLs and
more (this will likely be its own post some day)</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Sleep</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">sensory issues</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">sensory processing</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">understandingbody language</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Socializing</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Meltdowns and shutdowns</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Communicating</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Wandering</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">processing danger in real time</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">highly fixated interst</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">finances and understanding money and bills</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">I can't drive period</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">body awareness</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">facial recognition</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">Executive functioning</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">cooking/ cooking safely</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">staying organized</span></div>
<div class="MsoListParagraphCxSpMiddle" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">managing female issues</span></div>
<div class="MsoListParagraphCxSpLast" style="margin-left: 1.0in; mso-add-space: auto; mso-list: l0 level1 lfo1; text-indent: -.25in;">
<span style="font-family: Symbol; font-size: xx-small; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-language-override: normal; font-size-adjust: none; font-stretch: normal; font-style: normal; font-synthesis: weight style; font-variant: normal; font-weight: normal; line-height: normal;">
</span></span></span><span style="font-size: small;">and more!</span></div>
<div class="MsoNormal">
<span style="font-size: small;"> the truth is I have many many challenges and impairments, many of them are things you don't see or couldn't really know about with out spending real time with me. with out spending a day ot two with me or without taking on a job as an aid or caregiver for me most, of these impairments you would remain unaware of and would not know about from talking to me online or maybe not even spending
a few hours with me a week. (well depends really, more you wont see ALL of
them, but like spending time with me in person where you will see me stim and
talk to you through and AAC device<span style="mso-spacerun: yes;"> and i stuggle with eye contact and tend to hyper-focus, </span>but wether I was verbal or nonverbal wouldn't matter since either way you could only really see a few of my issues and could not possibly make
a proper judgement on the level of my impairments and disability just by interacting with me. This holds just as true if not more so online and when reading my writings, where i have many errors in grammar and spelling you are only
seeing a fraction of what i am struggling with and far far far from all of my challenges.<span style="mso-spacerun: yes;"> </span>The truth is <span style="mso-spacerun: yes;"> </span>I have come so very far in my challenges and
abilities since I was little and I hard to work hard to get to where I am today
years worth of OT , play and speech therapies, of doctors and specialists.<span style="mso-spacerun: yes;"> </span>thing like doing buttons on my own unless
they were snap buttons didn't happen until i was 10, tying my shoes i was 14
riding a 2 wheeled bike? 14 (and that i can't do safely and end up cut up from
it so i need an adaptive trike do to issues with body awareness) <span style="mso-spacerun: yes;"> </span>holding pencils and basic writing took years<span style="mso-spacerun: yes;"> </span>and years, I never did learn cursive and
computers made a HUGE difference in my ability to write to express myself!<span style="mso-spacerun: yes;"> </span>Yet all to often because I speak of a need
for acceptance or i speak out against autism speaks<span style="mso-spacerun: yes;"> </span>and can write online and express myself on the
internet I am told i am to high functioning to know what real autism is like
and people assume I have no real challenges or significant disability,What they don't realize when they assume this is I do have many very real challenges and I have worked very hard to achieve the things and accomplishments I have</span><br />
<br />
<span style="font-size: small;"> I am
not alone in this, this has happened to all of my fellow Autistics, This is a
practice a few Autistic friends and parent Advocates and I coined the phrase
for called functioning shaming <span style="mso-spacerun: yes;"> </span>definition
below. This is something that is very harmful and damaging, it takes away voices
from Autistics who had to fight to get their voices, Please keep in mind<span style="mso-spacerun: yes;"> </span>when someone id advocating for acceptance or
boycotting against an organization<span style="mso-spacerun: yes;"> </span>you
are only seeing a small fraction if their abilities and their challenges you don't
know how hard they had to work to get there you don't know what challenges they
have on a daily basis and by telling them they aren't impaired or disabled enough
you are not only making assumptions based off of what little you see but you are
also PUNISHING them for making progress (something you insist you want for your
child or loved one) but taking away voices many of us spent years fighting and struggling
to get, Voices that could give you insight and help you be able to help your
Autistic loved on. so Please stop assuming and listen you then maybe we might
both learn something and be able to help each other! </span><br />
<br />
<span style="font-size: small;"> please stop making snap jugments about somones abilitiies or lack of ablities off what the post about, stand for or from brief interactions</span><br />
<br />
<span style="font-size: small;">please stop using accomplishments to take voices away fro Autistics</span><br />
<br />
<span style="font-size: small;">please stop assuming someone cant have severe disability and impairments and still want acceptance and to be treated like a human</span><br />
<br />
<span style="font-size: small;">please stop using functioning shaming!</span><br />
<span style="font-size: small;"> </span></div>
<div class="MsoNormal">
<span style="font-size: xx-small; mso-spacerun: yes;">
</span><span style="font-size: small;">thank you!</span></div>
<div class="MsoNormal">
<span style="font-size: small;"><b style="mso-bidi-font-weight: normal;">Functioning shaming</b>
<span style="mso-spacerun: yes;"> </span>(1) the act of taking a person's
accomplishments and your perceived functioning abilities based of the fact they
have strengths or <span style="mso-spacerun: yes;"> </span>abilities in one area
and or choose speak out an organization that that talks about them yet shuts
them out and is harmful or they choose to advocate for acceptance and
understanding, <span style="mso-spacerun: yes;"> </span>to dismiss and belittle
their challenges and efforts to get to where they are today and silence their
voice from the discussion of their disability(2) The act of saying someone is
to impaired and disable to have an opinion and assuming they want a cure or
hate their disability <span style="mso-spacerun: yes;"> </span>because they have
many challenges and may not be able to fully self advocate yet / using their
impairments to deciding <span style="mso-spacerun: yes;"></span>they have your
opinions and thus you speak for them and know what they want and need. <span style="mso-spacerun: yes;"> </span>(also using their impairments to overlook what
they can do and their abilities. (3) the act of punishing autistics and others
with disabilities for developing or not developing skills) (4 The act of using
ones abilities in one area or lack of abilities in an area you to silence them
or speak over them</span></div>
<span style="font-size: small;"><br /></span>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-24363199964715117442015-04-13T22:18:00.000-04:002015-05-21T01:33:18.411-04:00WindWind<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 23px;">
<br />
Both exciting and horrible, I love and hate wind <br />
<br />
Wind is an all encompassing sensory experience , in the wind I loose sense
of direction and I become confused, in the wind I can loose balance and all
sense of where I am, walking into the wind is disorienting and blinding
sometimes blowing sand and dirt in my face or what ever else it has
picked up but the wind at my back sends my hair to blind me.. Push or pull,
left or right wind is overwhelming<br />
<br />
It takes up leaves branches and sand dragging them along, suddenly a loud
clashing as a metal can clangs along pushed on by the wind as the leaves
scratch on the ground and a rustle in the trees as branches sway,Dirt blows
into my face a thousand tiny pieces hit me at once as I close my eyes,
wind can hurt , wind is loud wind can mess up my entire sensory system,
sending me spinning Into sensory overload<br />
<br />
I can't figure out where I am the wind disorients me. A simple walk a path I
know for even but a short distance can confuse me in the wind and I might be
thrown off track and lost in the wind.<br />
<br />
But wind is awesome, wind is amazing, from inside, except when it screams,
wind is powerful, from inside it is exciting to watch it blow things
effortless around, sometimes in circles, I love big windstorms there is a sense
of adventure to them you never know what will happen and so long as I stay inside
I'm ok,<br />
<span style="color: white;"><br /></span>
<span style="color: white;">But still I love and hate the wind</span></div>
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<span style="background-color: white;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtHkyMSzInkoStZXIbxQ9QhZsmd4-6mlliEGyxNMzVIvqy2u3DuujbO3SgB1Q7LcGI0KVDWzF7X758VbdFc7C-pCC5h7Z9tAPr7okTkW3lOYvzMz7R4cTmGlfu6HfrwYXclC_n12Oynhk/s640/blogger-image-1612137391.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtHkyMSzInkoStZXIbxQ9QhZsmd4-6mlliEGyxNMzVIvqy2u3DuujbO3SgB1Q7LcGI0KVDWzF7X758VbdFc7C-pCC5h7Z9tAPr7okTkW3lOYvzMz7R4cTmGlfu6HfrwYXclC_n12Oynhk/s640/blogger-image-1612137391.jpg" /></a></span></div>
<br /></div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-15874832825759322662015-04-01T14:19:00.001-04:002015-04-01T14:33:06.762-04:00Lighting it up blue hurts Autistics! Wear Red instead and hangmulticolored light too!<!--[if gte mso 9]><xml>
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Hello,<br />
<br />
This year I will not light it up blue, I will not wear blue<br />
Please join me don't wear blue don't light it up blue wear red and hand
multicolored lights instead!!!<br />
What's wrong with blue?<br />
<br />
To starts off Autism is a vast spectrum, no to individuals are the same,
symptoms And the severity of the symptoms are different for everyone on the
spectrum and even this is a bit fluid for autistics. A single blue light
is very one sided one view, <br />
Light it up blue and wearing blue was started by autism speaks. autism
speaks is at the center of a major boycott and is the only charity continually
challenged by the people they claim to represent and there is a very good
reason for it!<br />
<br />
Autism speaks has several MAJOR issues that can not be ignored! From
irresponsible spendings where only 8 percent goes back into the community
in the form of services and 43 percent going into research that does NOTHING to
help autistics and is generally geared towards things such as prevention and
prenatal testing which would enable parents to choose if they want to abort the
child based off of a prenatal test, (this is based off of their 2011 tax
form because in their 2013 tax form they merged "awareness, such as adds
and self advertisement with "family services making calculations
very difficult)<br />
<br />
This means Autism Speaks is actually TAKING money out of the community that
could be going towards providing much needed supports and service<br />
<br />
What maybe even worse then taking much needed funding for resources out of
the community<br />
Autism speaks uses fear and demonizes autism to get donations, Awareness is
important but it is no good when it is done through creating fear, pity and
stigma and light it up blue is their national awareness campaign and is nothing
more then a thinly veiled self advertisement and I simply can't support autism
speaks!<br />
I refuse to support an organization that tells the world that I and others
with my disability are<br />
<br />
Lost<br />
Broken<br />
Missing<br />
A Crisis<br />
Tragedies and<br />
Ruining our families lives<br />
<br />
<span style="mso-tab-count: 1;"> </span>If any other charity said
this about any other minority there would be national outrage! What if this was
how national female, Hispanic, black, pagan, Muslim or christian
groups spoke of the people in their ranks? What if they went even further and
had none of those individuals in their actual organization and refused them a
voice? What if they garnered pity for family members who killed these
individuals sighting that person's gender, orientation or religion as being so
hard and burdensome their deaths were understandable and even acceptable? That
what Autism speaks does, when you support Autism speaks this is what you are
supporting! <br />
<br />
<span style="mso-tab-count: 1;"> </span>So I will not light it up
blue, I will not support autism speaks and I will not help spread an awareness
that at its core harms Autistics!<br />
<br />
<span style="mso-tab-count: 1;"> </span>Instead I am going to
promote Acceptance and understanding by wearing instead and hanging
multicolored lights for Autism Acceptance and by participating in events
created by Autistics! <br />
<br />
<span style="mso-tab-count: 1;"> </span>That's what we really need
acceptance, supports and understanding so please join me in raising the voices
of my fellow Autistics, promote acceptance wear red instead and hang up some multicolored
lights and shine a light for acceptance of the entire spectrum!<br />
<span style="mso-tab-count: 3;"> </span><br />
<span style="mso-tab-count: 3;"> </span>Thank
you!!!<br />
<span style="mso-spacerun: yes;">
</span>-AutismDogGirl<br />
<br />
<br />
<b style="mso-bidi-font-weight: normal;"><span style="font-size: 14.0pt;">For
more Autism Acceptance month activities Check out</span></b><br />
<br />
<b style="mso-bidi-font-weight: normal;">Not just blue- multicolored lights
for Autism Acceptance</b> <a href="https://www.facebook.com/events/1418248198477746/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: 17px;">https://www.facebook.com/events/1418248198477746/</a><br />
<br />
<b style="mso-bidi-font-weight: normal;">Walk in red</b> <a href="https://www.facebook.com/events/441004906049419/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: 17px;">https://www.facebook.com/events/441004906049419/</a><br />
<br />
<b style="mso-bidi-font-weight: normal;">Autism Acceptance Month</b> <a href="https://www.facebook.com/events/640472342746324/" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; font-size: 17px;">https://www.facebook.com/events/640472342746324/</a><br />
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com2tag:blogger.com,1999:blog-8453970511785136356.post-64538880993353539862015-03-31T18:45:00.000-04:002015-03-31T18:45:47.853-04:00very late and Devistationg upate : We had said good byr to Nim<!--[if gte mso 9]><xml>
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Hi Everyone,</div>
<div class="MsoNormal">
I have a devastating Announcement, I have been holding off
on making it here because I had already made it a few times in other places to
friends and family and it has just been to hard to post about again and I
honestly did not remember and when I did remember I did not have the strength <span style="mso-spacerun: yes;"> </span>to repeat this announcement until now, <span style="mso-spacerun: yes;"> </span>Nim , my beloved retired service dog, has
passed away, she died feb 20th around 6 o'clock. on Saturday feb 14th nim had 2
grandma seizures in her sleep. but was mostly back to normal the next day, <span style="mso-spacerun: yes;"> </span>Until tuesday night when suddenly nim started
getting sick.<span style="mso-spacerun: yes;"> </span>a trip to the ER vet and
we tried using pepcid to deal with what seemed to be nausea, but as the night
went on nim became confused and wandering aimlessly alert but confused.<span style="mso-spacerun: yes;"> </span>Thursday Nim seemed better though she was
getting stuck in corners (a lot) and walking dazed often in circles She also
would fall every once and a while. we had family come visit her on Thursday
night and she didn't seem to recognize them and responded to them by barking
but eventually realized who they were. <span style="mso-spacerun: yes;"> </span>Friday she lost all ability to stand, she
didn't seem to be able to respond when her loved ones entered the room. We were
very blessed to have close friends and family who could make it come with us,
and a few who got there shortly after, Nim did not die alone she was in the
arms of my friend Ca , my fiancé and in my arms as she passed, she was
surrounded by love and he last memory was being surrounded by people who loved
her.<span style="mso-spacerun: yes;"> </span>I can't begin to express how much i
miss her or how much i am hurting. Nothing is the same anymore, everything
feels off and wrong and I just cant even really express it right now.<span style="mso-spacerun: yes;"> </span>i don't even know how to end this post but to
say Nim was my first dog and my first service dog, she meant everything to me
ans still does she will always be missed greatly and she will always be my baby
girl/</div>
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<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHdJ1cYvWYvNeAPxEIMIC5SG4NuJxNmjGKkZIqRG-CgWMQpORiU-NcBe0Mrf7B5EZAf1A3u-V4p3uM7U9yxxXwUUL7J9eVSyFvE4QH5ezT9jwPfjdzWWZc3UlVhF4AsIkToimeaNBJx0/s1600/blogger-image--1738493429.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHdJ1cYvWYvNeAPxEIMIC5SG4NuJxNmjGKkZIqRG-CgWMQpORiU-NcBe0Mrf7B5EZAf1A3u-V4p3uM7U9yxxXwUUL7J9eVSyFvE4QH5ezT9jwPfjdzWWZc3UlVhF4AsIkToimeaNBJx0/s1600/blogger-image--1738493429.jpg" height="240" width="320" /></a></div>
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<br /></div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-12114931087084525992015-03-16T00:28:00.000-04:002020-01-25T14:12:05.831-05:00"I am Autism Speaks" An Adaptation of "I am Autism"" <!--[if gte mso 9]><xml>
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<br />
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Hello,</div>
<div class="MsoNormal">
<span style="mso-spacerun: yes;"> </span><span style="mso-tab-count: 1;"> </span>A few Years ago Autism Speaks
made a video that outraged the Autistic community called "am Autism"
they got such a strong backlash they had to take it down, However the memory of
it is still discussed in toe community today and you can still find videos of it
on social media. a while ago I got to thinking about it before I realized this
video was spt on with just about everything they were saying, However it did require
a few Edits and they forgot to add "speaks" after they said Autism, <span style="mso-spacerun: yes;"> </span>So Today to distract myself from Nim's loss I
made those Edits for you please Enjoy. My hope Is maybe Autism Speaks if you read this you will understand this is not meant to be mean spirited but to get you to do some real inwards thinking and consider the messages about Autism you are giving to the public Even though many of you have good intentions the way you speak about Autism is harmful, Please do some inward reflection and consider the messages you are sending out, ask yourself "how would I feel if a large organization said these things about me?" and consider just WHO you are choosing to ignore and shut out The Autistic Self advocates, and our family and friends who do not see us as tragedies or burdens but as people who need to do things differently but are still valuable and who still have voices weather we speak, sign, type to communicate or don't yet have the ability to use AAC so we communicate through our behavior. We live with Autism everyday, all we want is for you to hear us and to listen </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCXHoXJctGPZ3AFhyphenhyphen8Txl6wYCJMW-uqWEoXjR8a1iZYdqlMboW3RQot-Utz2FxQJm4FRdtK0bsMWmp9ThPHvo6pTFoYDY8xccl6PDXWjx84I7j2zpqa4qgUhL-niFKdlbSpgjX66mH3rk/s1600/bycottautismspeaks.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCXHoXJctGPZ3AFhyphenhyphen8Txl6wYCJMW-uqWEoXjR8a1iZYdqlMboW3RQot-Utz2FxQJm4FRdtK0bsMWmp9ThPHvo6pTFoYDY8xccl6PDXWjx84I7j2zpqa4qgUhL-niFKdlbSpgjX66mH3rk/s1600/bycottautismspeaks.jpeg" width="272" /></a><b>"I Am Autism Speaks"</b></div>
I am Autism Speaks<br />
My hatred is visible to your children, but if I can help it, It is invisible to you until it’s too late.<br />
I know where you live.<br />
And guess what? I live there too.<br />
I hover around all of you.<br />
I know no color barrier, no religion, no morality, no currency.<br />
I speak your language fluently.<br />
And with every voice I take away, I acquire yet another language.<br />
I work very quickly.<br />
I work faster than pediatric aids, cancer, and diabetes combined<br />
And if you’re happily married, I will make sure that your marriage fails.<br />
Your money will fall into my hands, and I will bankrupt you for my own self-gain.<br />
I don’t sleep, so I make sure you don’t either.<br />
I will make it virtually impossible for your family to easily attend a
temple, birthday party, or public park without a struggle, without
embarrassment, without pain.<br />
You have no cure for me.<br />
Your Advocates don’t have the resources, and I relish their desperation.
Your neighbors are happier to pretend that my propaganda isn't harmful—of course,
until it’s their child.<br />
I am Autism Speaks, I have no interest in right or wrong. I derive great pleasure out of your loneliness.<br />
I will fight to take away your hope. I will plot to rob you of your
children and your dreams. I will make sure that every day you wake up
you will cry, wondering who will take care of my child after I die?<br />
And the truth is, I am still winning, and you are scared. And you should be.<br />
I am Autism Speaks. You ignored me. That was a mistake.<br />
<br />
And to Autism Speaks I say:<br />
<br />
I am an Autistic self advocate, a father, a mother, a grandparent, a brother, a sister, a friend.<br />
We will spend every waking hour trying to weaken you.<br />
We don’t need sleep because we will not rest until you do.<br />
Autistics and Family can be much stronger than Autism Speaks ever anticipated, and we
will not be intimidated by you, nor will the love and strength of my
community.<br />
<br />
I am an Autistic Advocate riding toward you, and you can push me off
this horse time and time again, but I will get up, climb back on, and
ride on with the message.<br />
<br />
Autism Speaks, you forget who we are. You forget who you are dealing
with. You forget the spirit of Autistics, and mothers, and daughters,
and fathers and sons.<br />
We are Qatar. We are the United Kingdom. We are the United States. We
are China. We are Argentina. We are Russia. We are Ireland, We are the European Union. We are the United Nations.<br />
We are coming together in all climates. We call on all faiths.<br />
<br />
We use
picture Schedules, AAC technology, blogs, facebook, social media and
Twitter, and a growing understanding to spread Acceptance you never
anticipated.<br />
<br />
We have had challenges, but we are the best when overcoming them. We
speak the only language that matters: love and neurodergance and disability acceptance<br />
<br />
Our capacity to love is greater than your capacity to overwhelm.<br />
Autism Speaks is naive. You are alone. We are a community of warriors.<br />
<br />
We have a voice.<br />
You think because some of us cannot speak, we cannot be heard?<br />
<br />
That is autism Speaks weakness.<br />
You think that because you build a wall of fear and stigma, I am afraid to knock it down with my bare hands?<br />
You have not properly been introduced to this community of parents and
grandparents, of siblings and friends and schoolteachers and therapists
and pediatricians and autistic self Advocate.<br />
Autism Speaks, if you are not scared, you should be.<br />
<br />
When you came for Autistics, you forgot: you came for me.<br />
Autism Speaks, are you listening?<br />
<br />
<div class="MsoNormal">
Thank you </div>
<div class="MsoNormal">
-NonSpeakingNotSilent</div>
Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com4tag:blogger.com,1999:blog-8453970511785136356.post-50848968417347011672014-11-10T04:25:00.001-05:002014-11-30T11:06:52.007-05:00Dear JetBlue your Partnership with Autisticm Speaks will hurt Autistics<br><div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> Dear JetBlue</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> Hello, I am a non speaking Autistic adult. I recently became aware of your partnership with Autism Speaks.. I am very glad to hear your organization is interested in supporting those of us living with Autism. It means a lot to me as an Autistic adult. That is why I am writing you to make you aware that Autism speaks is an organization that not only is hated by the majority of people they claim to speak for but also hurts the autistic community. There are many issues with Autism speaks which have lead to a large scale boycott of their organization. Autism speaks excludes autistics from their borders. One of the major stances in the disability rights movement was nothing about us without us," this is something autism speaks is in direct violation of a Currently Autism speaks has not one Autistic person on any of their important board or position of power within their organization. Another major issue is how they promote and spread their awareness. Autism speaks has continually used negative propaganda and fear to promote their awareness this directly hurts the autism community as it not only promotes harmful stigmas against those of us with Autism but it also dehumanizes those of us living with autism. They paint Autistic individuals as a burden and a drain on our families. A recent example of this was Susan writes call to action when she addressed congress on Autism. She painted Autistic lives as a tragedy and told congress our families aren't really living. they were eating and breathing but not living.<br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> This sort of rhetoric s not only offensive not only to autistics but to our families. She goes on to suggest we will grow up to be burdens on society and will always be dependent and incapable of obtaining any real meaningful independence or future. This is incorrect and extremely harmful on many levels. With the proper supports and services a large number of individuals on all ended of the spectrum have managed to go to school, work and even some got married and had kids of their own! Additionally This serves to shame and dehumanize those of us who may never be able to be independent and overlooks our value as people. This also puts the lives and safety of autistics in danger! By painting us as a burdeN that will drain the economy and ruin our families autism speaks tells the world that we are less then human, by demonizing autism they demonize autistics, this not only creates fear of us but it also makes it easier for people to deny us our basic human rights and even harm us with little to no consequences! When a group of people are viewed as less it becomes easier for society to overlook them. People have historically done a great many horrible things to each other because they saw one another as less! Their propaganda plays to pity spreads stigma and creates fear. in the word of Evan J. Kemp Jr. "Playing to pity may raise money, but it also raises walls of fear between the public and us.," and to quote Drew Morton Goldsmith in his documentary <i><u>No pity</u></i> " No one's desire for a cure can ever justify reinforcing a stigma against disabled people.<br><br> Autistics and our families have tried to reach out to autism speaks many times in the past, telling them their awareness methods were harmful and stigmatizing however Autism speaks did not listen. To this day Autism speaks continues to shut out and ignore the voices of individuals who speak out against them.. Often dismissing an autistic person as to mild or a parent as having mild children and thus "not being the people they want to speak for," However even people with severe autism like Amy Sequenzia are speaking out against autism speak. Another major issue with Autism speaks is that only3-4 percent of the donations they receives actually go towards services and supports for Autistic individuals and our families. This means they are actually taking valuable much needed funding out of the community. funding that could be going to organizations that actually provide services to individuals and our families! This is a huge issue where there currently just aren't enough services and supports available to us and our families and those that are available are very expensive. Donating money to organizations that provides services help them provide services to more families and helps provide the funding for these much needed services! The ironic part of all of this Autism speaks recently released a documentary called "sounding the alarm battling the Autism epidemic" in which they spent a lot of time talking about the lack of services However autism speaks only spend3-5 percent of all their donations on services and supports for Autistics and our families!<br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> Autism Speaks is the only charity I know of that is so heavily resented by the people they claim to speak for and represent. In fact there are several individuals who strongly consider autism speaks to be a hate group/\. They may be the first charity ever (or at the very least in recent years) to be considered a hate group by people they claim to represent!</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Here is a joint letter to all cooperate sponsors of Autism speaks explaining in detail more of the issues requiring Autism speaks. Please do read this http://autisticadvocacy.org/2014/01/2013-joint-letter-to-the-sponsors-of-autism-speaks.<br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> I regret to inform you due to your partnership with Autism speak, an organization that hurts Autistics though their continued spreading of stigma, creating and spreading of fear of Autism while simultaneously shutting out and silencing the very people they claim to speak for. I can no longer use you airline and I will be telling all my family and friends to choose other airlines for as long as you continue a partnership with Autism speaks.<br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> I am very glad and excited that you wish to show your support for people with Autism (Autistics) and our families! this really means a lot to me . so please consider partnering with other Autism organizations that provide services and work every day to improve the lives of Autistics and our families I hope you will choose to listen to the voices of the Autistic Community, our families and supports by families and no longer partnering with Autism speaks.</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> -AutismDogGirl</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div align="center" class="MsoNormal" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">here are some great Organizations that help autistics and our families! </span></div><div align="center" class="MsoNormal" style="text-align: start;"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Autistic Self Advocacy Network</b></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://autisticadvocacy.org/</span></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Autism Society of America</b></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://autisticadvocacy.org/</span></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Autism Women's Network</b></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://autismwomensnetwork.org/</span></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Easter seals</b></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://autismwomensnetwork.org/</span></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Doug Flutie Foundation</b></div><div class="MsoNormal"><b style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://www.flutiefoundation.org/</b></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> Thank you for your time</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> -AutismDogGirl</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">More links</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">No pity</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">https://www.youtube.com/watch?v=R3DwCn6VeZY</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">boycott autism speaks</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">www.boycottautismspeaks.com</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">is autism speaks a hate group?</span></div><div class="MsoNormal"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">http://autismwomensnetwork.org/is-autism-speaks-a-hate-group/<br><br><br></span><a href="https://scontent-a-iad.xx.fbcdn.net/hphotos-xaf1/v/t1.0-9/10552490_717551750516_2408229485255684734_n.jpg?oh=8c28cda0394d8e007578d1168ab8054f&oe=54E1D46D" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><font color="#000000"><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><img alt="" border="0" class="spotlight" src="https://scontent-a-iad.xx.fbcdn.net/hphotos-xaf1/v/t1.0-9/10552490_717551750516_2408229485255684734_n.jpg?oh=8c28cda0394d8e007578d1168ab8054f&oe=54E1D46D" style="height: 292px; width: 250px;"></span></font></a><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><span style="height: 398px; width: 537px;"><img alt="" class="spotlight" src="https://fbcdn-sphotos-d-a.akamaihd.net/hphotos-ak-xpf1/v/t1.0-9/10547701_717578566776_6515366387976928382_n.jpg?oh=a40596a3b00519001c56780f5e846c38&oe=54EFB896&__gda__=1428184445_eceece033054e9e222f4d9e77128097d" style="height: 398px; width: 537px;"></span> <br><br><br></span><br></div></div>Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-16700970492592765792014-11-01T00:25:00.001-04:002014-11-04T20:44:33.906-05:00Autism speaking day there is just to much to say.<!--[if gte mso 9]><xml>
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Autism speaking day there is just to much to say.<br />
<br />
Hello, so I am going to have to make this short as I am writting this last
minute, I had hoped to have something nice long, elegant and elaborate written,
but sadly other obligations have gotten in my way this year. Some of the reason
is also indecision. What did I want to write about?<br />
<br />
Part of me wanted to write about autism service dogs, real autism service
dogs, dogs who are trained task. Maybe tell you a bit about how when your an
adult with autism it is nearly impossible to find an proper program that will
train a service dog for you. Or how most autism service dogs are cross trained
as a service dog for someone with autism is trained tasks to help deal with the
sensory issues and sensory process challenged that come with autism. I thought
about telling you how most programs only train for children with autism and how
these program not only use but promote a dangerous practice known as tethering,
then I thought about explaining how this puts both the child and dog in harms
way. I thought about telling you how many programs are scams and many more are
just poorly informed well meaning programs who train cookie cutter service dogs
for autism often with tasks that are weak at best such as deep pressure, if
they train tasks at all but will sell their service dogs on the emotional
benifit. I thought about ranting how we deserve better than this and need to
stand up for reform not just for the adults but for the kids and for our
families who shouldn't be taken advantage of or put in harms way.<br />
<br />
I also consider telling you about how I have read a lot in the news lately
about the need for services for kids and how few of them there are and that's
true! However what everyone over looks os there is even less and basically
nothing for adults over 22!!!! How today there are hundreds of autistic adults
struggling without the services they need. I thought about how this too was
something important I wanted to talk about.<br />
<br />
I also wanted to talk about communication. I wanted to tell you verbal
speech isn't the same as having few or no daily struggle and challenges, how
autistics who are verbal still may need substantial support through out their
lives. How being able to speak and even do so well can often hide the fact you
can't communicate. Because often times people who are fully verbal still can't
communicate. It is one thing to talk about a special interest but a whole new
thing to get the words "I'm hungry," "I'm hurt," or be able
toe press even more complex needs, thoughts and emotions. I wanted to tell you
that individuals who can speak often loose the ability at times and they aren't
being bad or trying to get attention or whatever. Their brain has shut off
their ability to communicate it's something that happens. It is important to
realize this isn't their fault and to be patient . Offer additional supports or
just give them time and space.<br />
<br />
I want to tell you about acceptance and how it isn't given up. I want to
tell you acceptance is about embracing the whole person autism and all and
loving them! Acceptance is saying yes you are autistic your brain works differently
and instead of trying to change you into someone else we are going to take you
by the hand and together we will find your strengths and build on them and we
will help you find ways to cope and manage with the proper supports in the
areas in which you struggle because acceptance isn't about given up and not
trying. When you truly manage to embrace and find acceptance it becomes a road
to progress, growth and development! It's setting goals and not given up
working with what you have instead of trying to be something your not and that
is the best thing in the world you can do for yourself or your child.<br />
<br />
I wanted to talk about functioning labels and tell you why they don't work
and how they only hurt autistics. I want to tell you no one fits perfectly into
these labels and they only get in the way of progress by causing people to put
limitations on a child causing people to not really want to put effort into
them or cause them to be written off instead of never giving up and working
towards helping them build their strength. They also cause people to be
over looked in their challenged and supports they need causing individuals to
have to struggle daily because they can't get needed supports because people
see them As a useless label of high functioning and assume they must be fine
since they seem high functioning to them<br />
<br />
Lastly though I wanted To tell you about AAC! Aac stands for alternative augmentative
communication. They are methods of communication such as PECs (picture exchange
communication), Sign language and things such as type to speak or symbol
communication apps for the iPad like proloquo2go or taptotalk. When it
comes to AAC I want you to know this, AAC is for EVERYONE not just those who
can't speak, but for those who are verbal but may lose the ability or those who
are verbal and need help with word retrieval or just plain feel better
communicating via AAC. I want you to know that everyone has the right to
communicate in the method in which they prefer and feel is best for them. There
is so much focus on getting verbal when our focus should be on providing
communication as soon as possible! It is never to early or to late to introduce
AAC! It is important to model AAC too. communication is key! So providing
communication option as soon as possible is massively important! OH! And and
don't rule out iPads if your child isn't responding to pecs or ASL! For many of
us the iPads are a lot more intuitive! most importantly presume
competence<br />
<br />
Anyways these were only a few things and very very abbreviated sorry this
years entry is short and messy but it's Halloween night and I am exhausted
thank you for reading this<br />
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-33398850038950722872014-10-16T23:36:00.001-04:002014-10-16T23:36:51.977-04:00Redoing the Alexicom reviewI just discovered something new about Alexicom while checking things before publishing my review so I will be doing more testing before I publish<br />
<br />
- sorry for the delay im sorry <br />
-AutismDogGirl<br />
<br />
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<br />Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-18544235641910178122014-08-23T17:06:00.001-04:002014-08-23T17:06:24.854-04:00Updates changes and backed postsHello,<div> I wanted to write a quick blog post to give everyone a bit of an update. I am going to bee adjusting and making some updates and changes to this blog over the next few months. I also have a few over dues reviews including my review of the Alexicom app and posts I have not published typed. Please be patient this havps been an extremely busy several months but I will post them as soon as I am able.</div><div><br></div><div><br></div><div>Thant you for your time and understanding</div><div><br></div><div> -AutismDogGirl</div>Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com1tag:blogger.com,1999:blog-8453970511785136356.post-6837806257751246002014-06-29T16:03:00.000-04:002014-06-30T00:10:59.104-04:00, @SesameWorkshop you cant combat stigma by teaming up with theorganization that spreads it!<div>
Dear Sesame Street,</div>
<div>
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This was one of the flash blogs I have been more passionate about. I was raised with Sesame Street! It is a beloved childhood memory for me, along side lamb chops! Growing up as a very small child I was very sick. I ended up having open heart surgery at the age of 4! One of my favorite movie was big bird goes to the hospital. I would always watch it before I went and over and over again at home. This show acted as a social story for me and greatly helped ease a lot of my anxieties. I admit to humming or playing the main song from it to this day at times I have had to take my retired service dog or my pup in training to the vet. Especially to emergency vets. So you see, your show still has a place in my life today! So I wanted to make sure I did this blog post right. Before I wrote this blog I did a bit of research and red some of the things there bloggers had posted, then I decided to read through the comments section.of a post shared by the huffington post. It was heart breaking to say the least. There were people and parents commenting about how this boycott and the boycott of autism speaks is all "high functioning," autistics and not by "real severe autistics," or that their kids had severe autism and autism ruins lives ect. There were a lot of great replies by other autistics to such comments. But those comments to tell the truth still hurt I started to wonder if I should write this blog? I started to think that maybe I didn't have a place to speak on this, because maybe I was to "high functioning," and people would see me as to high functioning and thus anything I had to say on this matter would be tossed aside as not having value because I wasn't severe enough. I decided that, eepven if that does happen I still need to write this blog and get it out. So here we are!</div>
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Why am I mentioning this??? Because this is the exact type of message autism speaks sends out! They promote an us vs them mentality in the autism community. Autism speaks demonizes autism and use fear about autism to raise awareness an get their funds. When autistics have spoken out to them on this they dismissed them as to high functioning. This is a form of shaming I call functioning shaming. They are saying if you do not like what we say about autism you are to high functioning and your voice doesn't matter. The truth is this boycott isn't just by those with high functions autism you will be hearing from many with moderate to severe forms of autism as well. Functioning shaming is very damaging and the truth is those who tell you we are all high functioning and thus don't have the right to speak on this matter don't know us, they don't know our lives our challenges or struggles. Please don't fall for the functioning shaming. The truth is functioning labels are even real diagnostic labels and have been proven to be unsound, and they are often based on of someone can't speak or not. However there are plenty of people on the spectrum who are verbal to highly verbal but can not care for themselves or live independently and there are those who are nonverbal that have decent self care skepills and may one day live on their own. Don't dismiss the many and diverse voices of this community. </div>
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As well as reading what others have written I watched the video with Abby the fairy where the autism speaks partnership was introduced. Susan wright talked about an initiative to combat the stigma of autism and to celebrate the amazing in all children. I admit I was in a bit of shock, because you see autism speaks is one of the biggest promoters of the stigma surrounding autistics!!!!</div>
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It really baffles me that they claim to want to address the stigma and promote acceptance of autism cause they are the biggest contributors from their autism every day video to their address to congress last fall.</div>
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They tell you they want to help fight the stigma and promote understanding and acceptance of autism,so let's examine a piece of their work really quickly. Tell me if this sounds like promoting acceptance and understanding for autism and combating the stigma. in their address to congress in a call to action they stated</div>
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"These families are not living.</div>
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They are existing. Breathing – yes. Eating – yes. Sleeping- maybe. Working- most definitely - 24/7.</div>
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This is autism.</div>
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Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. </div>
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This is autism.</div>
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On the good days my daughter Katie and all the other moms out there – 70-million around the world – see the sun shine. They notice the brilliant colors of the autumn leaves. On bad days, they are depleted. Mentally. Physically. And especially emotionally.</div>
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Maybe they have been up all night caring for their teenage child who’s having a seizure.</div>
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Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.</div>
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Maybe their child has been trying to bite them or themselves.</div>
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Maybe they can’t afford the trip to a doctor specializing in autism.</div>
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Maybe there is a waiting-list for ABA, speech and OT. </div>
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Maybe their insurance won’t pay.</div>
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Maybe they don’t have the money to pay a special lawyer to fight for school services.</div>
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This is autism."</div>
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Link: <a href="http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action">http://www.autismspeaks.org/news/news-item/autism-speaks-washington-call-action</a></div>
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<b>They went on further to say this;</b></div>
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""Close your eyes and think about an America where three million Americans and counting largely cannot take care of themselves without help. Imagine three million of our own – unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help.</div>
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This is a national emergency. We need a national autism plan – NOW."</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzBm3RuRXNvN6ORtJQ6TUzhXO89aTmIrkHC8-0zLRsC6mMTlWl4h0sjX7ZC9aTsTKtf7mLJLKpVEcsz2AcNuCkZ1w53-Y1rCHxw89bZYdmBA0ko9T58zoJ8Ie5nFYVpJyzyhGjTUqHNlQ/s1600/educatesesamestreet.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>They completely ignore the vast diversity of the spectrum and pain an image that everyone with autism is like this and that those who are like this basically aren't human. They don't celebrate their amazing they stigmatize and spread fear.</div>
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How is this not promoting the stigma and demonizing those with autism? This isn't acceptance and fighting for acceptance this is pure unfiltered fear and dehumanization. This isn't combating the stigma or showing the amazing at all! It's just a lot of harm and stigmatizing. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh65B2hTvKj7iqh9jtK4wHrzdo4YK2KlKUPRD7yqMal8_NAoxyTZSHLa1-R0DtdOy9_yh5Ds_p6FpqZ1KzLEMe86vItEAs0xSSlFVUYFyMClytnZ1cOJstbluFqgaFMGTOMuC1e_R0vdA/s1600/educatesesamestreet.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"></a>You see much the same message here I am Autism <a href="http://vimeo.com/20692567" target="_blank">here</a> and in Autism Everyday <a href="http://www.youtube.com/watch?v=ytcC1QXyxp4" target="_blank">here</a>.</div>
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<b>Here is what autism speaks really says the messages they have continually and my views on them.</b></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid8_36yh09mu0mmHVhYGFa3vDSFlektlxOMSNyy8HRjBlCp3AiWdAXnUYk2AJS33IW5TCI_HnmH_7YKm7exBwfC3zzNuQKZO0WWusXdEQEJP-eQ82uHqLvCX5KgTsvG0QTXmRf9IYGVPo/s1600/educatesesamestreet2.jpeg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid8_36yh09mu0mmHVhYGFa3vDSFlektlxOMSNyy8HRjBlCp3AiWdAXnUYk2AJS33IW5TCI_HnmH_7YKm7exBwfC3zzNuQKZO0WWusXdEQEJP-eQ82uHqLvCX5KgTsvG0QTXmRf9IYGVPo/s1600/educatesesamestreet2.jpeg" height="302" width="320" /></a><b>Autism speaks tells you we are lost, locked away and unreachable </b></div>
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We are not we are here, we hear and understand everything you say even if we can not speak we understand you! We are right here listening waiting for you to reach out and meet us where we are at and to love us and accept us for who we are, not where you wish we were or who you wish we could be.</div>
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<b>Autism speaks says we don't communicate: </b></div>
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we can speak or do speak we are ALWAYS communicating with you, it just isn't in ways you expect! It's ok to be anxeous it's diffrent I know but if you put aside everything you have been told and all your preconceived notions of how things should be and really open your heart and your mind you can find away to reach us, but you have to be ready and willing to enter our world. </div>
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<b>Autism speaks tells you our lives are a tragedy,</b></div>
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We are not tragedies we are people who live, yes we are disabled yes we have challanges but our lives matter we still have value the real tragedy is the fear and dehumanizations spread by organizations like autism speaks so they can get your money </div>
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<b>Autism speaks will tell you we don't have a future,</b></div>
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We do have futures and with the proper supports and services and with understanding and acceptance from the community we can have fulfilling and bright futures, If we are taught to embrace our passions and build our strengths then we are capable of anything we may dream! All we need is the right supports, services and acceptance </div>
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<b>Autism speaks tells you we are puzzles missing pieces</b></div>
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But we are not, our lives and challenges may be puzzling to you and navigating your world maybe puzzling to us, but we are whole and complete people! We aren't broken! Many autistics don't like the puzzle pieces because of the negative things autism speaks has attached to it, but the autism ribbon is multiple puzzle pieces and wasn't created by autism speaks, autism speaks has on single blue puzzle piece that reflects pretty well their one sided narrow view on autism.as well as the negative messages they spread. I how ever embrace the multiple puzzle pieces, they are bright and vibrant and uniques as each person on the spectrum, the variety of colors to me show there is a large and amazing spectrum of people living with autism, I also see them in a different way! Not that I or any other autistic is broken or missing pieces but rather that we are whole complete amazing beautiful individuals and it is the community that is missing pieces, these pieces are the proper supports, services acceptance and understanding, with those pieces we can become part of the community! However I do acknowledge and respect that some autistics do not see it this way and perfer to not use puzzle pieces and that ok too.</div>
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<b>Autism speaks tells you they speak for and advocate for autistics </b></div>
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The truth is they don't! Rather quite the opposite. They actively seek to silence autistics! From their very beginning autistics have spoken out to them, trying to explain to them why their adds hurt autistics and what they should change! They never listened! They shut out every one of them! A few years back a 14 year old girl made a parody sight on them after they made their "I am autism," video that Basically demonized autism and was honestly really creepy! The site mirrored how autism speaks spoke about autistics only for NTs or non autistics they went after her, claimed she owed them a tone of money in lost donations then said they wouldn't make her pay if she signed over the rights to her website,! They BULLIED an AUTISTIC CHILD!! To add to this autism speaks has never had a single autistic person on their boards of decision maker or in any meaningful positions in their organization. There is a stance in the Autism community Nothing about us with out us. Yet Autism speaks feels they can and should tell you all about us, without us and they have no problem trying to shut us up and silence our voices when we object to how they do it. recently a bill has been up for re approval, the combatting autism act (think of this title for a minute) which was changed to the autism cares act (a much better title) there was a very big amendment to this bill that was purposes that autism speaks BLOCKED!! </div>
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http://autisticadvocacy.org/wp-content/uploads/2014/06/SCHAKOWSKY_01_xml.pdf</div>
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For a clear explanation : http://autisticadvocacy.org/2014/06/asan-statement-on-autism-cares-act/</div>
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That's right they blocked an amendment that would require autistics to be involve in several of the boards and such that are part of the autism cares act! It that isn't actively trying to silence autistics what is?</div>
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Autism speaks doesn't speak for autistics, autism speaks hurts autistics!</div>
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We can't continue with this type of awareness! You can not combat the stigma by partnering with an organizations that spreads it to get donations. </div>
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Sesame Street you have always been about inclusion and treating each other as equals. This is why I hope you will and I ask you to please, hear our voices and reconsider this partnership with autism speaks! You will find and see a ton of people reaching out to you asking you to reconsider this partnership as well! autism speaks doesn't value equality or understanding. This is an organization that really hurts autistics! We as a community are excited you want to create an initiative to promote acceptance and combat the stigma so Please consider other organizations such as Arc, The autism self advocacy network or the autism women's network. These organizations do promote, acceptance and true understanding. They value the lives views and voice of autistics something autism speaks does not.you cant combat a stigma by joining forces with those who promote it! </div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0tag:blogger.com,1999:blog-8453970511785136356.post-4799013337208467792014-06-14T16:18:00.001-04:002014-06-29T17:08:19.005-04:00We need an AAC community!!<div style="font-family: UICTFontTextStyleBody; font-size: 24px; line-height: 31px;">
Hello,</div>
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I am not sure when or if this will be doable but I want to creat a community somewhere for Nonverbal semi verbal partially verbal and even verbal adults with autism and other disabilities who are either full time part time or just occasional aac users as well as parents friends family and even professionals like speech pathologist ect to come together and share tips advice and most importantly to share things like symbols to use with AAC devices and visual supports. Right now I am working on looking into how to get this type of things set up. it will keep you informed as I work on figuring this out. If you have any suggestions please feel free to comment or send me a message </div>
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Thank you </div>
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-AutismDogGirl</div>
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Non Speaking Not Silenthttp://www.blogger.com/profile/06956450553296516222noreply@blogger.com0