tag:blogger.com,1999:blog-4675590510792979183.post4965269811015299634..comments2024-03-28T04:11:32.480-04:00Comments on Uncommon Sense: "I need a new word"Danahttp://www.blogger.com/profile/11193445038085911249noreply@blogger.comBlogger24125tag:blogger.com,1999:blog-4675590510792979183.post-50581889292427705822013-12-12T14:27:20.024-05:002013-12-12T14:27:20.024-05:00You give me hope. And strength. All of it. My son ...You give me hope. And strength. All of it. My son is nonverbal at 3 and I am so scared. Your blog has given me hope. I have read it from start to finish. Thank you for sharing your feelings. I can relate to so many of them.Katehttp://findingcoopersvoice.com/noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-77324732262290051172013-09-03T19:57:08.984-04:002013-09-03T19:57:08.984-04:00I have a son with a "unique" diagnosis &...I have a son with a "unique" diagnosis & rarely read blogs of others with special needs kids because our situation is so different. I found your blog looking for reviews of the Dynavox Maestro & couldn't believe the similarities between Maya & my son. Thanks for sharing your story! Also, this post reminded me of when my daughter was 2 & insisted she wanted the "lion tines!" We eventually realized she wanted "Little Einsteins"Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-82628084660899914412013-08-23T08:23:23.636-04:002013-08-23T08:23:23.636-04:00I read this in your post:
"Children with com...I read this in your post:<br /><br />"Children with complex communication needs (more commonly-but inaccurately-referred to as nonverbal children) often become passive communicators---they quit. Or, alternately, they rage and breakdown and tantrum. It's the third option---stick to it, don't get upset, stay determined---that is both difficult and essential to foster. I don't really know how to encourage it. I don't know what I would do in Maya's shoes. I think I would want to quit, too."<br /><br />... and as you can tell from the date, it's been banging around in my head for the past 10 days to reply to this paragraph. I'm finally here and have searched out this post so that I can say:<br /><br />You DO know how to foster her communication resilience.<br /><br />You foster it by assuming her competence. By assuming she has things worth communicating to you, and that she WILL be able to communicate them if you give her enough opportunities and methods and time.<br /><br />You foster communication resilience every time <em>you</em> don't give up on her efforts to communicate. You communicate to her, by your own actions, that her communication is valid and valued.<br /><br />You foster her resilience by following her lead about her preferences with communication, even when it means putting a button where she wants instead of where you want, or using a device that she's less accurate with but prefers to use.<br /><br />You foster her communication resilience every second of every day, pretty much. Not perfectly because you're only human, but I've read every blog post you've ever written and you do a superlative job of advocating for her and listening to her.<br /><br />(Also, OMG did you see Angela from Super Why left you a comment there?! Wow!)jeshyrhttps://www.blogger.com/profile/18135667107836142301noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-68426681225164894742013-08-20T00:54:55.385-04:002013-08-20T00:54:55.385-04:00How do I possibly begin to tell you how this post ...How do I possibly begin to tell you how this post makes me feel?!<br /><br />To create a children's program that touches the hearts and minds of incredibly special children like Maya..I am honored to have the opportunity to make such a connection. <br /><br />So on behalf of Whyatt & the rest of the Super Readers, thank you for welcoming us into the lives of your children and keep up the INCREDIBLE parenting because you are all as inspiring as they come!!<br /><br />xo<br />Angela Santomero<br />creator: Super Why!, Blue's Clues & Daniel Tiger's Neighborhood<br />http://angelasclues.com/Angela Santomerohttp://angelasclues.com/noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-34069906401283728762013-08-16T14:49:46.861-04:002013-08-16T14:49:46.861-04:00You know those posts you read and it's as if s...You know those posts you read and it's as if someone else has been inside your head?<br />That.<br /><br />Found you through love that Max, and will definitely be reading more! We've been there too, so many times - it's that look in my sons eyes, that 'this is too hard. You don't know what I mean. I give up'. It hurts so so much to see, doesn't it?<br /><br />I'm glad you've found so many ways around the stumbling blocks, and I'm sure Maya will continue to surprise you!<br /><br />Take care<br /><br />LucasAbstract Lucashttps://www.blogger.com/profile/10396367651843421077noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-31990427709879061362013-08-15T15:37:28.871-04:002013-08-15T15:37:28.871-04:00I love everything about this post, even though it ...I love everything about this post, even though it made me mist up a bit!<br /><br />I remember when my son kept asking for something that sounded like "checkers" or "check us" and finally, finally, we realized he was saying "taxi." What relief!Cathy Ballou Mealeyhttps://www.blogger.com/profile/07925815654400078026noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-82662995040756093082013-08-13T07:14:14.877-04:002013-08-13T07:14:14.877-04:00Amazing moment to capture and share! So loved read...Amazing moment to capture and share! So loved reading about it!wiredONdevelopment@gmail.comhttp://wiredondevelopment.blogspot.co.nznoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-7643493487542031442013-08-12T20:40:56.965-04:002013-08-12T20:40:56.965-04:00Dana, you and Maya are such an incredible team. T...Dana, you and Maya are such an incredible team. This post made me cry for the strength and incredible determination. It is so clear how much she trusts that you are fully with her in this struggle to find a way through this - and it is so clear that you will succeed together. Thanks for giving us such a close look at how you work through this. It's really inspirational.annehttps://www.blogger.com/profile/15369626535630125879noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-68224243863062508682013-08-12T19:02:17.654-04:002013-08-12T19:02:17.654-04:00Thanks for sharing! Maya is wonderful.
I have a 1...Thanks for sharing! Maya is wonderful.<br /><br />I have a 10-year-old who is non-verbal w/ autism. He uses an iPad w/ Proloquo2Go. He can use it just fine and dandy. The issue we deal with it getting him to <i> want </i> to communicate.<br /><br />One step at a time.Anonymoushttps://www.blogger.com/profile/08200115226339522731noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-44443403118099029292013-08-12T18:31:34.450-04:002013-08-12T18:31:34.450-04:00She's amazing!! I am in awe of her persistence...She's amazing!! I am in awe of her persistence. I can't imagine how frustrating it must be, for both you and her...Micernicehttps://www.blogger.com/profile/03142223567040930094noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-6564723070092944502013-08-12T17:08:50.225-04:002013-08-12T17:08:50.225-04:00Oh wow, we have gone through *exactly* this, down ...Oh wow, we have gone through *exactly* this, down to my kid pushing the "Icon Tutor" button (search) on her talker and then repeating herself over and over, then going to where the word might appear, then back to Icon Tutor... Sometimes I get it after a while and I'll add the new word or show her where to find the word she is seeking, but sometimes I don't, which is SO frustrating. Our kids have so much inside them! I am glad that this story had a positive resolution though - and I feel like as Maya gets older, she'll have the ability to tell you more and more with all the tools she has available. Great post!!!!Marlahttps://www.blogger.com/profile/16809949267562980590noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-59587449362664152892013-08-12T16:42:29.169-04:002013-08-12T16:42:29.169-04:00This is amazing! Good for Maya. I love that she kn...This is amazing! Good for Maya. I love that she knew exactly where the button needed to be to make it work for her and that she kept going until she had what she needed. She is amazing!Monicahttps://www.blogger.com/profile/14506619008552501153noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-87835387991609129462013-08-12T16:18:37.810-04:002013-08-12T16:18:37.810-04:00Oh my gosh! What a heartwarming post! Way to go ...Oh my gosh! What a heartwarming post! Way to go Maya! <br /><br />And, way to go Mama for teaching her to be persistent! That is a personality trait that will take her far!<br /><br />Rebeccahttps://www.blogger.com/profile/02211058404652219862noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-65272539261146769592013-08-12T14:27:30.163-04:002013-08-12T14:27:30.163-04:00In retrospect, Too Wah = Super Why makes a lot of ...In retrospect, Too Wah = Super Why makes a lot of sense! :-)Suehttps://www.blogger.com/profile/13012002151975859000noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-47499141639707759452013-08-12T11:48:16.668-04:002013-08-12T11:48:16.668-04:00I feel your pain! That scrape, scrape, scrape........I feel your pain! That scrape, scrape, scrape..... Hate it.<br /><br />My 17yo daughter with moderate cerebral palsy cannot speak (no hearing loss), so we use sign with her (she's pretty fluent, although sometimes lazy). I swear, at least once a day I struggle to figure out what she's signing, or trying to sign, to me. Even when she spells something out, it can get lost in the shuffle of poor spelling and not knowing the context for things.<br /><br />Keep it up with Maya! So proud of all she's doing and LOVE that's she's spunky and asking for new words!<br /><br />And hang in there, Mama. Scrapes heal, even though they are painful. :)Kerith Stullhttp://brielleandme.net/noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-20645018926522910902013-08-12T11:46:24.222-04:002013-08-12T11:46:24.222-04:00This post is such a wonderful example of living wi...This post is such a wonderful example of living with a child with complex communication needs. I like to call it the "never ending game of charades combined with 20 questions that nobody wanted to play in the first place". I find myself asking questions like you do. "what does it start with?" "person, place, or thing?" "sounds like?" on and on and on. I always have to remind myself that as exhausting as it is to be on the guessing end, it must be even harder on the other end. I identify so much with the tone of your voice in the videos. It's helpful (scrape) with an undercurrent of desperation (scrape) that I wish neither of us knew. laurelsmomnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-945932903753841052013-08-12T11:04:56.085-04:002013-08-12T11:04:56.085-04:00You are so right to push for a placement that will...You are so right to push for a placement that will make her literate. You have to remember that kids who combine Maya's high level of intelligence with a high level of interest in communicating are a minority of those using those devices. This means that the mindset of educators isn't always initially where it should be.<br /><br />I have one idea for another word button. Maybe "TV Show." You could then discuss with Maya how she could if she wants a tv show that isn't yet in the talker, she can say that word, and then even the letter. You can model for her, even act out the whole thing. (You can pretend to be her. press tv show, say in your voice 'hmmm Maya wants a TV show, Oh "S" "Mayas so smart to tell me the letter it starts with." hmmm is it Sesame Street, "no" hmmm "Super Why?<br /><br />Just an idea from someone who is NOT an expert in these things at all. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-77755679963846797652013-08-12T11:04:44.897-04:002013-08-12T11:04:44.897-04:00This post has hit so close. Watching Sophie strugg...This post has hit so close. Watching Sophie struggle to communicate breaks my heart into pieces every day. I too would give her my voice in an instant if I could. She reminds me of Maya in ways too, in her determination and her cheerful demeneor. We want to start the assisted technology with her too, we're working with PECS right now to build her vocabulary. Your blog is very inspiring, I hope all the best for you and Maya. Sophie's Trainshttps://www.blogger.com/profile/07774177895296697594noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-84216289115997965972013-08-12T10:16:47.080-04:002013-08-12T10:16:47.080-04:00definitely push for a great literacy program. my s...definitely push for a great literacy program. my son has mild cerebral palsy and still has trouble putting words together in his own sentences. yet two weeks into kindergarten he brought a photocopied book home from school and started slowly and painstakingly reading the sentences to me. sentences. i was stunned. Maya is lucky to have parents like you who can see her potential and be a great advocate for her. thanks for continually sharing her story. joee_thttps://www.blogger.com/profile/00581554428626291320noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-20695116655971260082013-08-12T09:44:07.245-04:002013-08-12T09:44:07.245-04:00Oh gosh, yes, so frustrating and heartbreaking but...Oh gosh, yes, so frustrating and heartbreaking but YAY for Maya and her determination. You are so right about the high expectation for literacy. She's proven herself over and over. I hope this is an excellent academic year for Maya and that her teacher really listen to her.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-32351250164214630442013-08-12T09:36:40.716-04:002013-08-12T09:36:40.716-04:00this is incredible! i loved watching the videos a...this is incredible! i loved watching the videos and your daughter's joy when you finally figured out what she was saying. we will pray that communication starts coming easier for her. keep it up! (my daughter also struggles with expressive language so i get the heartbreak of it)christinahttp://www.welcomeblessings.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-6151079575306498952013-08-12T08:53:52.767-04:002013-08-12T08:53:52.767-04:00Oh, this is so familiar to me. Even after three ye...Oh, this is so familiar to me. Even after three years with his device, my son often struggles with making his needs known. In our case, it's not because I can't understand the word he's using but because he's using it as a sort of shorthand for something else. Decoding it is always a challenge. When it works, it feels like a million bucks! When it doesn't it's awful.<br /><br />You and Maya are an incredible team. This story, the videos, made me cry this morning.<br /><br />You are smart to push NOW for the literacy programs to be in place. We've been fighting for that same thing for three years now and are just barely making headway. It's frustrating.<br /><br />Wishing you well. :-)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-34199741095935387312013-08-12T08:49:40.939-04:002013-08-12T08:49:40.939-04:00Thank you for sharing your family's journey to...Thank you for sharing your family's journey to help your daughter speak / communicate. I have been reading your blog for a month or two. I have a 14 year old low verbal severely autistic son. Thank you for sharing this story, brought tears to my eyes in a great way!Quilting in the Southhttps://www.blogger.com/profile/10166327755958529959noreply@blogger.comtag:blogger.com,1999:blog-4675590510792979183.post-61053289661890657332013-08-12T08:46:59.050-04:002013-08-12T08:46:59.050-04:00I hope you find the right placement, Maya is so sm...I hope you find the right placement, Maya is so smart and I know I would love to teach her! I live that you asked to where the button should go, both giving her the ownership and practicing her categorization skills.Anonymoushttps://www.blogger.com/profile/10175486897439267229noreply@blogger.com