Schuyler is taking a summer school class, one that deals specifically with reading. Yesterday she brought home a little story book she'd been assigned, and she excitedly read the first story to me. I was so pleased with how well she did that I set up the camera and had her go through it again.
This will give you another opportunity to observe her verbal speech, along with the actual words that she's reading for comparison. Mostly, though, I just wanted to let her show off a little. Reading is a hard skill for nonverbal kids to learn, and I think she's kicking it old skool.
By the way, the story kind of sucks. (SPOILER ALERT) Hamsters are just about the slowest, laziest animals on earth shy of a sloth, and even sloths can climb trees. Well, what are you gonna do?
36 comments:
Hey Rob
Thanks for sharing that. Schuyler is doing really great. I can see how much hard work it is for her to form so many words for such a long period but it was great that she could maintain her concentration for that length of time. I did notice that bit of drool escape but only a couple of times which, for these kids, is truly a miracle. It is exceptionally difficult for them to concentrate on the tone of the mouths generally but to concentrate on reading and speaking the words as well as not drooling is a big task.
And thanks for showing the Hamster "Swee". As an Aussie....we don't have hamsters and I always wondered if they were the same as a Guinea Pig....they're not! (Just in case you were wondering...)
Oops....also wanted to add that despite being a child who struggles so much with speech, Schuyler has an amazing ability to get a beautiful lilt in her conversational tone. I love listening to her. My favourite part......"weeak weeak, said the hamster"
I love how much she loves to read. She also understands how important it is to read with emotion and feeling. I will assume that she has some good storytellers at home to emulate.
I am a reading specialist and I just want to say WOW!. As another poster mentioned, she has amazing prosody (expression, fluency, etc.) when she reads.
Thank you so much for taping her reading and putting the words on the screen. It was really neat to be able to see the words and hear her talk all at the same time.
As a teacher, I have a question. After reading I assume the teachers ask her questions. How does she do on the comprehension side of reading? Does she answer by talking or using her BBOW?
Great job Schuyler!
I know I'm supposed to be focusing on her speech and reading, but I'm entranced by her pre-tweener hair adjustments. I remember being a wee lass, when adjusting my hair was a full time job! She doesn't have the teen hair adjusting affects down ("the sarcastic bang shift," "the sullen ear tuck," "the embarrassed head toss") but soon. Soooooon. :)
I guess what I'm saying is that I'm already seeing the young woman Schuyler will become ... and she's a beauty with some sass!!
Great job, Schuyler. I loved watching you read. Keep up the good work.
LOVE. Love the inflection, the emphatic fist with "we must catch him!", the little hands drawn up with "squeak squeak". She is a TERRIFIC story teller. Thank you, Schuyler!
Such expression! She really doesn't have that wooden tone that so many new readers have.
She is doing so GREAT! Why am I crying?
I feel like when she looks at the camera, she's saying "Wow. This book sucks. Sorry dad."
Very cool. Very Very Cool!!
The content of the book seems young for her-it seems like she could handle content with a beefier vocabulary-
Wow, such great inflection! That makes me think her comprehension is good? Great storytelling, Schuyler!
Also...I think I'm becoming a bit jealous at her wardrobe. This dress, the black (or navy?) and pink striped dress, the Hello Kitty hoodie...
Total cuteness.
What a great blog, and a great post. You have a great reading voice. Keep up the good work.
"Thank you Miss Schuyler. That was a great job. Reading books can take you any place you want to go. Congratulations!"
That was just AWESOME Schuyler! Great job! :)
That was amazing. What I found interesting is I could understand many of the harder words, rather than the easy ones.
I have followed you a long time. I am just amazed at how far she has come.
Thank you for fighting so hard for her.
She has great inflection. (The story did kind of suck but) she made it so fun to hear!
Thanks for reading me my bedtime story, Schuyler! :)
Schuyler is one great storyteller. Love her inflections!
And sweet digs for Swee!
I am impressed with Schuyler's ability to read with feeling, which a lot of "typical" kids don't get! She even made the dialogue sound different: "Let ME see," said Jed. Not many kids would do that, they often just read as fast as they can in a completely flat monotone.
Thanks for sharing this video, Rob!
Schuyler, you are an incredible reader and story teller! :)
The intonation as she speaks is great. You can tell when it's a question verses a sentence.
Thank you for sharing Schuyler with us!
I'd say Mrs. Finn needs some anger management. Instead of yelling at poor Jed she should have been more vigilant about making sure the hamster didn't escape.
And what's with the big box? Hamsters are small; they can be transported more easily in a travel cage.
BTW, Swee looks like my father-in-law. Give him a little pair of glasses and a TV remote and a Barcalounger and you have identical twins.
I love the video! I wonder if you might take some time and write a post about how the school and you and Julie are teaching Schuyler to read. Yes, I know very well that the statistics out there say those who have difficulty with verbal speech are at risk for literacy problems. Looks like you guys are kicking some ass on that! Andrew will be in kindergarten next year, and we are very interested in how you have made the success you have with her. It is a tricky thing to figure out what a kid knows who has difficulty telling you, and most kids learn by sounding out the sounds and saying the words. This is probably not the way Schuyler has learned, so how are you guys doing it? What are the mechanics of teaching a limited verbal child how to read?
I second that, can we get a post on how you guys and her teachers are working on this difficult step! (I am a special education teacher in Atlanta and always am interested in new techniques for my "Box" kids)
First of all, great video. What a doll she is and what a great job she did with that story :)
There will be no stopping this girl with her will and you at her back.
As for starting trouble with the book. I have already started passing it around the building. I wanted it to go to our speech therapist first, but that didn't happen. I plan on getting another copy or two so the story travels more quickly :)
I already told the mom of one of our students about it. ( Her dx is mitochondrial disorder) She is remarkable, too. Her mom is excited to get a copy....
I seriously love that book, and hope that you will have another chapter of Schuyler's life someday.
She's a good story teller! Her inflections are perfect!
I think Schuyler was/is a victim of the 'It's Always This Way' School of Safe Diagnosing.
Fortunately for Schuyler, her parents follow a different philosophy.
When you and Julie took Schuyler to Dr. Dobyns, he told you there were not more than 100 patients, worldwide, with PMG. And, based on that small database of limited case studies, Dr. Dobyns, apparently, felt comfortable enough to label Schuyler as 'retarded'. I specifically remember you using that word, and I thought 'how dare a doctor use that word (in this day and age) to describe a patient'.
In any case, he told you she would not speak, and was probably incapable of learning more than just basic skills. And, I remember this because I wondered, at the time, how you and Julie found the strength, courage, and grace to breath, let alone keep it together enough to ask intelligent follow-up questions, pretend everything was okay around Schuyler, drive your car, eat, etc. How did you manage, BTW?
Consequently, when you show Schuyler not only reading, but reading aloud, among the many other tasks she wasn't supposed to be able to do, I'm filled with an intense urge to find Dr. Dobyns and kick his pretentious, and smug, little ass right up between his ears.
It should fit right into the space usually reserved for the 'Wow! Good Thing I'm a Scientist, Because This Is Very Interesting' part of the brain.
Thank you for the space to rant. And, finally . . . Go, Schuyler! And, go entire Rummel-Hudson family! You guys are amazing.
Schuyler is beautiful and a great storyteller! She reads with more expression than a lot of neurotypical kids her age!
My own daughter is several years older and is nonverbal too (with much more physical involvement, severe & profound C.P., alas), but she's been making some very important and unexpected gains lately and we're hoping to teach her to use her P.R. speech device, to at least be able to communicate basic wants and needs.
Thanks so much for sharing Schuyler's continuing story. I love your blog and I've put your book on my wishlist. Please keep up the great work.
I've been reading your blog for a while but I'm generally not a commenter. Seeing this though I do have a question. Since Schuyler is struggling with reading, how does she use her device so well? Is it all pictures or simple words she knows? I know very little about these devices but I would love to understand more.
Anne asked, "Since Schuyler is struggling with reading, how does she use her device so well? Is it all pictures or simple words she knows? I know very little about these devices but I would love to understand more."
My guess is that Schuyler is not struggling any more with the reading part than any other child her age.
What she is stuggling with is turning the words inside her head into sounds that we can hear.
My daughter also uses a PRC communication device to speak. The screen on the device includes words and icons. The icons are simple for people without reading skills to learn and 'read' but they are also faster for people who can read to use. Many people who use communication devices use icons even as college educated adults because it's faster to pick out what you are looking for on a screen of icons than a screen of words.
This is not just true of communication devices, but of things in general. For example, my iPod touch has icons for each application and I'm willing to bet that your computer desktop has icons for different applications. Not because we ca't read them, but because it's faster not to.
Schuyler, you are doing great a reading. I love how you put emotion and emphasis into the story. I think your mom and dad probably read to you a lot (or did before you could read to yourself). I bet they make the stories really fun.
My daughter has cerebral palsy and she did talk some when she was little. It took a lot more effort for her even than it takes for Schuyler (and I can see how much effort it takes for Schuyler). On the rare occassions when my daughter did speak - she sounded much like Schuyler. I've tried to explain the sound to people as speaking with the mouth wide open without being able to close it for any sounds. If you try that yourself, you will find it's difficult to get any sounds out correctly and you will have the same halt between words as Schuyler has, just because of the difficulty in pushing the words out and trying to form the next sound.
Anyway, thanks for sharing. I enjoyed seeing Schuyler read.
That was fun.
Once again, it is driven home that Schuyler has trouble with words, but has a great gift for communication. She managed to convey so much with only vowel sounds and inflection. Her effort is palpable, and the rewards are apparent.
Keep workin' it girl!
-e-
I don't want to take anything away from Schuyler's accomplishments, but I have to say I can see how heartbreaking her situation is. You can tell by her inflections that she understands the words, and really wants to say the words, but her brain is just not letting her mouth form the words. My heart goes out to her and you. Congratulations on all she's achieved so far. I hope one day there's a breakthrough that lets her speak like everyone else.
Thank you for sharing so much of your personal experience. I was wondering if Schuyler has taken a computer keyboarding class at school or as an extracurricular activity? The reason I ask is my fourth grade daughter learned keyboarding at school this past year. She can now type very quickly. I think Schuyler has so much more to share and if she could type everything she wanted to say, there would be no stopping her. This of course is my very humble opinion so feel free to tell me to STFU if I am way off base.
Amazing! Yay, Schuyler your doing a great job.
You think the story is dull - try being a teacher who has to listen to them every day. over and over. In the UK we have a delightful reading scheme including the characters Biff, Chip and Floppy the dog. Really? Biff and Chip? However, if Schuyler was reading to me, I'd probably be happy to listen all day...
Your daughter is just wonderful! I looked away from the screen so I could listen to the words and not read along with the words. I could understand what she said without the words you typed up there! She came through loud and clear!
What a beautiful, smart, wonderful, sweet child you have there.
jemma
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