The last post generated a lot of comments and a few questions about Schuyler's future development. I really appreciate those questions, enough so that instead of answering them in my comments, I thought I'd pick one of them and answer it here. Hopefully it'll cover other questions some of you have had or may have as well, although with Schuyler and her monster, there are always more questions.
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Given that she is now able to say "no," how hopeful are you that she will gain more consonants?
"Hopeful" is a tricky word, because some mornings after dreaming of Schuyler talking to me, before I wake up completely, I am entirely hopeful that she'll greet me with a kiss and a "Good morning, Daddy!" Those waking moments are almost happy enough to compensate for the hard reality that lands a few seconds later. Almost, sometimes.
But realistically? Not much has changed in the area of hard consonants, or her ability to use any consonants at all. She has had N and M all along. What she has been unable to do until now was appropriately place them in their proper places in words. She occasionally says "mommy", too, which is new. Until the past six months or so, when she would say "no", it came out as "mo", but she couldn't say "mommy". She had some of the soft consonants, but was unable to process their placement.
Unfortunately, she has no hard consonants and never has. Will she one day be able to form them? Obviously we'd like to hope so, but polymicrogyria is a huge mystery to everyone who has ever studied it or dealt with it. Keep in mind that even though her speech sounds to some as if it is physically impaired, it is in fact entirely a result of her neurological condition. In some ways, that suggests a hopeful future, since there's nothing physically keeping those sounds from being formed. But it also puts the solution in the court of Schuyler's brain, and that brain has never been her best friend.
The brain is a powerful and mysterious organ, the most important but easily the least understood part of the human body. On one hand, when you hear Schuyler's speech and you see how in some ways, it seems so close to normal human speech, the logical question feels like it should be "So why can't she bridge that last bit and eventually speak normally?" That's the late-at-night question, the one that haunts us all.
But when you look at the MRI scans taken four years ago this month and you see and understand just how profoundly affected her brain really is and how much real estate the monster has claimed, the unanswerable question becomes "How did she ever get this far in the first place?" Schuyler has achieved so much to get to where she is that it seems almost unfair to deny her that last step. Like Pinocchio, there seems to be only one wish left to make for her, such a little thing, a trifling wish.
And realistically, from a medical and neurological perspective, one that is very unlikely to come true.
In some ways she's come further than we'd ever dared to hope, which is wonderful. But in order for her to be truly intelligible in her speech, she would have to develop some sounds that she has never made before.
Are we hopeful? Of course. Her achievement now has been in taking sounds she's had all along (soft consonants like M and N) and using them appropriately, and it's not a small achievement at all. But the hard truth is that even just finding the rest of her consonants would be an extraordinary event.
Schuyler's real achievement has not been in beating the odds and defeating her monster, but in sneaking around it and making her own way. It's not that we think she's going to talk one day (although obviously that would be everyone's dream come true; literally, in my case), but that she will continue to make herself understood however she can. I like to think that in her use of inflection and pitch with her actual voice and with her developing skills on her device, she'll continue to develop a voice that may be different from the rest of us but will be both effective and uniquely her own.
I don't believe in miracles, but I beieve in Schuyler.
6 comments:
First, I want to say that I think I've listened to Schuyler's message 20 times. Don't mean to sound crazy stalker, but--wow, it just makes my day!
Thanks for the added explanation. I think I had a pretty good understanding of where the problem originates. But it does seem like Schuyler is figuring out a way to connect the parts of her brain that the monster didn't ravage. Making new bridges--if that makes sense.
I believe with every fiber of my being that Schuyler is making these advances because of the attitude you and Julie have adopted about the Monster. It isn't going to get in your way. Period. She's a lucky girl--and a determined one.
I liked the way she was so fascinated with the microphone and cheerful about trying to talk to us. Have you ever recorded the BBoW for us so we can hear that voice?
I guess I dream that she will learn to write like her father and start her own blog. I liked when you posted little things she wrote on her device.
The human brain is an amazing thing- people can lose or damage whole regions of it, and still live. The remaining parts of the brain somehow "reprogram" themselves to take over the functions of the missing or damaged areas. It seems like your daughter's brain is doing just that- slowly reprogramming itself to work around the damage.
Schuyler's awesome. I miss the videos, so the sound clip was a cool fix. :-)
Do people ever assume she has a hearing impairment? She sounds a lot like a girl I know who was born deaf. It's interesting because that's also a case where the problem isn't physical inability to pronounce hard consonants. She just has never heard them and so, as hard as she works to speak normally, can't quite fit it all together. Different problem obviously, but the resulting "accent" is remarkably similar.
Do people ever assume she has a hearing impairment?
It happens occasionally, although she is so reactive to the world around her that it becomes pretty clear early on that she can hear. But it was the very first thing that she was tested for, all those years ago, and by far the most extensive tests she underwent were all for her hearing. She took four of them at Yale New Haven Hospital, if I'm remembering correctly.
The first time I saw the documentary "Sound & Fury" (about deaf children and the controversy behind cochlear implants), I was also struck by how similar Schuyler's speech sounds to that of deaf children.
Wow, my son is the opposite! He has nothing BUT hard Gs and Cs as far as consonants go. Sometimes M, but he rarely uses it when he's supposed to, he mostly uses in place of B. (For instance, "blue" is "mmrrrooo".)
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