The Big Box of Words has been such a positive thing for Schuyler and her future that I think I usually fail to give a completely balanced picture of the ups and downs that accompany her experience with assistive technology.
Of late, she's had something of a rough time with the BBoW. There are times, especially during the school year, when Schuyler really seems to dig the device and the very unique place she has in the world because of it. Lately, though, I think it's just pissing her off.
Part of the issue is summer. No school, no peer group of device users, and no structured classroom environment. Just her smelly old parents and lots of activities that are not even remotely BBoW-friendly. She loves to swim, for example; she has never willingly left the pool without at least a grumble or a plea for five more minutes. She'd stay in her swim suit all summer if she could, her device hidden safely away on dry land. For the Fourth of July, we went camping with my brother's family, and I can count the times I saw her use the device on one finger. I know because I made her do it, and while it wasn't exactly under protest, she definitely did the bare minimum required.
We've decided to try to vary her techniques a little, stepping back up to the sign language plate again, for example, as a parallel technique alongside the device. Schuyler's condition limits her fine motor abilities in her hands and thus keeps her from being truly skilled at signing, but that never kept her from having real enthusiasm for it. She learned most of her signs from the early Signing Time videos, which I think I've discussed before, and now that they're on PBS, the DVR catches new episodes every now and then and we all sit down and learn them together. Her signing is limited by her own monster-stifled, clumsy fingers and by the limited number of people who can understand her. Nevertheless, signing still presents an elegant way to speak that the Big Box of Words simply can't match, at least at this point where she's still constructing sentences and thoughts at a necessarily slower, sometimes maddening pace. She understands the necessity of the device, but I think she sees the beauty of sign language in a way that I am only now appreciating myself.
Recently, Schuyler has begun to outwardly express her own awareness of her monster. She has this thing she does now to explain it, a whole story told in gestures and sign language. She gently touches her throat and shakes her head. She then touches her head with her finger (the sign for "think") and draws a line down to her mouth, signifying how the things she wants to say don't make the trip from her brain to her mouth. I like how she recognizes that her voice is broken, but her mind is working. It's important for her to know that her thoughts are there, and they are magnificent.
The thing about this little mimed explanation of Schuyler's condition, however, is that no one taught it to her. It's all hers. While some people worry about how to tell her what's wrong with her and how to explain it in gentle terms that won't bruise her delicate psyche ("Don't call her broken!"), Schuyler has figured out her own harsh reality by herself and expresses it without a hint of self-pity or trauma. Schuyler knows her monster better than any of us; it's presumptuous for anyone else, even me, to pretend we understand it, too, or to think that we can somehow tell her something about it that she doesn't already know on some visceral level.
Lately, Schuyler has balked a few times in public at using the Big Box of Words to answer other people's questions, and the sense that I get from her is that she may be starting to feel, if not embarrassed, at least self-conscious about it. Schuyler may delight in being a weird little girl, but only when it is on her terms. A speech output device still represents her very best (and possibly only) chance of being able to spontaneously communicate any kind of real expressive thought, but it remains an unnatural way for a little girl to speak. I suspect the day is coming, and soon, when her desire to be "normal" is going to cause some serious heartbreak for her.
There's one literary figure with whom I have always associated Schuyler, although to even say it aloud breaks my oft-broken old father's heart right in two.
In her own very unique way, Schuyler is Pinocchio.
39 comments:
Wow. Thank you for that dose of reality. Looking ahead to future frustrations has got to be so maddening at times. I am so sorry.
But as independent as Schuyler is and wants to be, she's pretty lucky to have so incredible advocates and representatives as you and Julie. Without your words, we'd never know any of this. So, thank you.
After finishing the book, I wondered at what point Schuyler would begin to realize that while she is a completely cool kid, she is different - that there is something wrong with her.
I rememeber when a family friend's daughter - who is now 21 and functions at a 4th grade level (and whose monster has never been given a name) - was 16 and asked her mom why all of her friends were driving and she couldn't. That was it - the moment she realized there was something wrong with her, something that made her different from other kids her age. It broke our hearts.
Thanks for reminding us that while there are many moments of hope and happiness in your story, the monster still has its grip on all of you.
WHile it is (and will be, I'm sure) sometimes difficult to watch our children struggle with their unique identities as "broken" children, I think you nailed the crux it with this sentence—
" It's important for her to know that her thoughts are there, and they are magnificent."
She will find her path, much the same as any other growing being with ot without the extra challenges our kids face. It won't always be easy or peaceful —or pretty, but she'll do it on her own terms.
Hang on for the journey...and keep sharing it with us.
I have seen the pain when your child realizes they are different and cannot do everything their friends do. Frustration levels get high for them and letting that out in a way that people understand is tougher. Schuyler is a wonderful girl and she will figure it out. When you look back on it(as I am beginning to do) you realize they are extremely gifted in ways that we will never understand. They touch hearts in ways that we cannot comprehend nor will ever be able to. My son is mute and has many of the same difficulties as Schuyler. This summer I have seen a side of him that I have not seen since he was 7 or 8, he is 13 now. It does break your heart but hang in there...you will be amazed.
OH MY but she's a fabulously gorgeous Pinnochio. What a stunner.
Is there any chance of her learning to type and being able to speak faster when she is older? Or will her clumsy fingers prevent that?
Rob, I feel your heartbreak, as a parent, you want to spare her the pain you know is coming.
"Don't call her broken!"
*slight eyeroll*
I wonder what they say when their kids fracture a bone - it's not broken, it's just differently-aligned? The child born with stumps instead of hands or feet is merely "streamlined"?
On the one hand, I understand the visceral reaction some might have to calling Schuyler broken - as every single post you've ever made demonstrates, it's not *her whole self* that is broken, and I can see where some might have a "baby/bathwater" type reaction to a statement like "Schuyler is broken."
However, even as I acknowledge that, I'm still rolling my eyes. Renaming a thing to make it "nicer" or "kinder" or "less cruel" doesn't change the thing itself. Reminds me of Casey Serin's assertion that he had achieved "0 percent success" on some of his goals - you can call it "0 percent success" but it still equals failure. I'm sure someone could come up with some charming, upbeat, happy little description to encompass Schuyler's condition, but it wouldn't change the fact that her brain is broken. At least you have - and teach Schuyler to have - the courage to address it head-on instead of trying to dress it up in an innocuous pretty little nickname as if that'd make it all better.
Rob -- My 6 year old son is profoundly deaf and has a cochlear implant, the external processor to which must be removed when he engages in any water activities. So, just like Schuyler, during long, hot summer days, we are often hit with a dose of harsh reality when his communication with us is extremely limited. He cannot hear anything (which is very scary when he's in the water -- and very frustrating to whistle-blowing life guards that haven't yet been clued in as to his hearing loss). This will be his reality (until the CI manufacturers take on water-resistance), but it's especially frustrating this year, as he's attending his first day camp and is keenly aware that the other children are not handing in their "ears" to their counselors before hitting the pool or pond. His hand will quickly point to his ear and he'll remind his companion(s) that he cannot hear you without his ear. His father and I truly do not know when that gesture/reminder will stop bringing tears to our eyes, but our son's ability to just deal with it -- forthrightly -- always makes us proud. Sounds a little like Schuyler, right? Great post -- thanks.
Talking about this kinda makes me wonder, your daughter's story reminds me of one I read when I was a child, the story of Helen Keller.
Relevant info here:
http://www.rnib.org.uk/xpedio/groups/public/documents/publicwebsite/public_keller.hcsp
Yes it was a long time ago, however perseverance was a virtue then as it is now.
I was recently on the bus with two college students, one of whom could not speak (it wasn't obvious why). He was typing to his friend on a blackberry-type device, and then showed it to the friend who read it silently and responded back in voice. I was thinking of Schuyler and wondering if something like that (a bit more like the technology everyone uses these days) might eventually work for her, though I did remember that her fingers and hands may not cooperate for something so tiny. But I just marveled at these two young men and what technology was allowing them to do as they stood on the bus.
Great post Rob. This one and "vox monstrum" make me see Schuyler in a new way, perhaps getting a glimpse of how she views herself... it's amazing to see her coming into this sense of self-awareness, even with the sad realizations that will inevitably bring. Perhaps this will be the start of the sequel to your book ... written by Schuyler herself.
Hi Rob and Schuyler! I understand too what you are saying. My son, Andrew is learning his BBoW and is starting to have some success with it. We started a group therapy with new AAC device users yesturday, today we decided to bring it with us to the YMCA for our gymnastics. I have a camera strap I put on the device, and he tried to bring it with him during some of the exercises, but he is still so small and even at 3 1/2 pounds it is too much for him to carry for long. We did show it off to the teacher some though. We stopped in the hang out area where mostly boys hang out and play some pool and foos ball etc, watch some movies. I found "Can I play?" on the device, and he picked that up really fast, went over and showed one of the boys the box and played the message. The kid looked at him, then at me and said "Is he sick?" I said no, it is just what he uses to talk with. But they did let him play!! That is powerful stuff, man! Then one of the counselors asked him his name, and he ran over and got the box and hit the "My name is Andrew"button. Something so very simple, but so impossible for him to do. The box opens doors, but it is also so sad. The mix of emotions of watching him learn this is amazing really. Proud, excited, but also still very sad that we have our monster too. I am right there with you.
I would like to thank you for your daily blog. I am a college student studying to get my masters in Speech Pathology. My teacher recommended this book and site to me. I have just bought the book and am so excited to read it. I think Schuyler sounds absolutely amazing! I look forward to the book and to keeping up with your stories you post. Your families strength is a blessing and so helpfull to see. Thank you
If she's interested in signing, and the videos don't have the words she needs, there are a number of good ASL dictionaries online.
My favorites, when I was signing with the baby (just for fun, not because she needed it, if you're curious) are:
http://commtechlab.msu.edu/Sites/aslweb/browser.htm
http://www.aslpro.com/cgi-bin/aslpro/aslpro.cgi
http://www.lifeprint.com/asl101/pages-layout/signs.htm
(They're also the top three on google, coincidentally.)
In a pinch I also cheated and stole signs from British Sign Language and Australian Sign Language, but that only works for in-family communication. For the outside world, that's a lot like randomly adding French and Russian words in your speech.
That's so hard. For all of you. I, too, worry about the day that my son realizes that he's different and has to learn to deal with it. There's nothing we can do to help them, and that's the hardest of all.
It's amazing that she loves signing even if she's not perfect at it.
Marc, above, was reminded of Helen Keller -- but I found myself wondering how much, if anything, Schuyler knows about Dr. Stephen Hawking. His monster is different, but he's also got a disconnect between a magnificent brain and an absent voice, and also has his own Big Box of Words -- which he not only used to write a book that gave everyone a headrush, but also used to guest-star on THE SIMPSONS and have a guest vocal track for a song by Pink Floyd.
The more I think about it, the more I'd want to be a fly on the wall for a conversation between Stephen Hawking and Schuyler.
If she's interested in signing, and the videos don't have the words she needs, there are a number of good ASL dictionaries online.
I use the first one on your list. I'll have to check out the others, thanks!
Ugh, except when they give different signs for the same words...
They give different signs because ASL, like English, has different regional dialects.
Knowing multiple ways to say the same word is like being able to choose between pail and bucket, or soda and pop.
Not only does it mean you're more likely to understand a stranger but, more importantly in this situation, it gives Schuyler a chance to choose the signs that are easier for her to make. (Or that she thinks are cooler. Whatever.)
Actually, ASL has *more* regional variation than English does, I believe.
Just a thought..alot of community colleges offer an online course in sign language, it's primarily geared towards people in the Early Childhood Education program but there's no rule that one has to be. Could something like that be helpful in teaching Schuyler if you or Julie took the course?
Halfway through this post I was so excited and giddy -- Signing Time is now on PBS?? What??! I had no idea and am setting the DVR as soon as I post this!
By the end of the post, my heart was somewhere up in my throat. My son is nonverbal, too, though younger than Schuyler and less socially aware. We are hoping he will have a BBoW one day.
Your comment about seeing her as Pinocchio was profound & broke my heart a little bit, too. But I hear you. Thanks for a thought-provoking post, Rob.
Just a thought, Rob - did the start of Schuyler's self-consciousness using the BBoW coincide with her using her new "big girl" voice?
Your daughter is beautiful - she looks a lot like Drew Barrymore. Maybe she'll be a Cover Girl model someday and support you in your dotage with those big checks! :-) Thank you for an insightful blog.
I read my daughter's blog, and yours. Both of you write about family in a way that touches my heart. The last two sentences in this latest entry speaks volumes. Thank you for sharing.
Hey Rob- I have no idea what the limitations of her "monster" are regarding typing- but- with arthritis and large fingers, my friend finds it so much easier to type on a qwerty keyboard phone (with larger buttons)using only his thumbs to text instead of trying to use all fingers on a keyboard. That would follow with the other suggestion that perhaps a blackberry like device would make her feel more comfortable. I would go so far as to suggest the iphone with it's touchscreen typing might help as you don't have to actually push down a button... just a thought.
You might want to check out the Texas School for the Deaf in Austin. They have students with varying degrees, and kinds, of brokenness. They might even offer short summer programs or some such thing. I bet Schuyler would find the community to be very welcoming.
Also, ASL isn't just regional, it has its own nuances that don't necessarily translate well into English, so that might explain some of the variations with two different signs for the same English word. It doesn't translate word for word, because it's a language all of its own.
There are also Deaf Clubs all over the country. You might be able to find one where you live and attend in order to become more proficient with signs or even just meet someone who would be willing to help you learn.
Just my two cents.
Jennifer
The last time we checked with them, the School for the Deaf in Austin very pointedly did NOT offer any services to hearing kids. Not sure if that's changed, but then, Austin is a long way from here, too.
I'm really surprised that the School for the Deaf was not more accomodating. My experiences here (given, Iowa is not Texas, but I would think differences would be small) are that the Deaf culture provides space for lots of differently-abled people. I can imagine, though, that they may not like the BBOW, so that could make the issue more delicate.
I'm disappointed with them--I can imagine that Schuyler would just soar there, given the opportunity.
Jennifer
Thanks for the good post.
Demystification can be a powerful thing. I heard Mel Levine and Rick Lavoie speak about understanding who you are as a learner and as a person. Yet, self understanding can be challenging too. Great to have friends, family, and good teachers at all ages, for all students getting to know themselves.
Don't sell ASL short. Lots of people sign. The box is not her only hope. Many people with poor dexterity sign well none the less. ( My favorite ASL interpreter is missing two fingers. He says it doesn't seem to matter.)It is a very beautiful language, although not one I speak.( Although at work I can use an interpreter for interactions with ASL speaking clients.) We have local college classes for sign, and so have many fluent signers in the community. Schuyler might really like going somewhere- Gaullaudet springs to mind, but there must be somewhere closer- where she could see large numbers of people conducting their lives in ASL. As always, thanks for sharing your life with us.
Rob,
I looked into the deaf and hard of hearing programs in my area too. That door was slammed hard and fast. "He is not deaf, he does not qualify." I still am irked about that. I wish there was a community for our kids. The deaf community is smaller than the hearing community, but it is still a community. Somewhere where our kids could join in and feel like they are a part of something. The school Schuyler goes to sounds like it is somewhat of a community for her, but once you break out of that bubble there is no one else like you. I understand this all too acutely. I get pissed really, thinkin that the world is so not ready to meet us where we are, expects us to conform to them. If you don't fit in the box they just don't know what to do with you. We don't fit in the box of the deaf culture, but we also do not fit in the box of the hearing world either, because he does not speak, at least not much. So sad, huh?
Earline
I'm really surprised that the School for the Deaf was not more accomodating.
I think it was simply a matter of resources. Apparently there is a huge waiting list for deaf students, so they can't really afford to make space for anyone else. Their mission is for the deaf, and I respect that.
Schuyler is just stunning, on so many levels. Thos photo is incredible too.
Our deaf school is experiencing low enrollment (likely due to cochlear implants) and now have a class for kids who hear but who have language disordrs like aphasia and apraxia. My son is going to their preschool program for having a new diagnosis of severe apraxia, yet he is the only deaf kiddo in the group. Just wanted to share that.
I just learned of an amazing new summer camp (and I am not affiliated with it in any way, honestly), and I thought of Schuyler. It's for kids on the spectrum and kids who have nonverbal learning disabilities. Check it out: Maybe it could be a good place for her to be -- a really supportive community.
Re my previous comment: but children attending the camp don't need to have been diagnosed with either.
Completely off topic but last night I was bored and decided to read the old Flappo newsletters.
Oh. My. God. I laughed my ass off!
I wanted to share a blog by an AT specialist - actually he writes two blogs and posts near daily. Lon at http://nolimitstolearning.blogspot.com/.
Also, Camp CAMP http://www.campcamp.org/ is worth exploring. I have a lot of experience there a few years back; can recommend it. They used to do a whole week just for children using AT - grant funded, teachers and STs would attend with the child as a 3-person team experience.
I'll be back. Please stop by and see my blog. All the best, Barbara
She looks SO MUCH like Julie in this picture. And far too grown up already -- this and the next picture with the forever legs!
I know how you feel. My daughter, 4 and a half years old has mixed expressive/receptive language disorder and she has hard times forming sentences. When she was younger it was so much easier, now nobody wants to play with her since she is not talking.It breaks my heart every time now when I see her trying to communicate with her peers and sometimes I see she knows that she is different and that she just can't talk like they do and the look in her eyes just kills me. I would give up anything for her to just be able to talk.
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